"The Word I Didn't Know I Was" by Marina Ortiz Caiuby
Summer Season Letters From A Caregiver
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Letters from a Caregiver.
“Letters from a Caregiver” is a weekly article where a caregiver offers their wisdom, compassion, and hope to their younger self. No one knows us as well as we know ourselves, and even then, we may second-guess ourselves. The choices, challenges and tragedies we’ve faced have forged us in more ways than anyone can understand; in ways we’re still trying to decipher!
Since September 2025, thirty-two letters have been written over the past three seasons.
This Summer Season so far
Today’s ‘Letter from a Caregiver’ is by Marina Ortiz Caiuby
I met Marina earlier this year. While our caregiving and life circumstances are very different, I recognised common themes, a resonance in her articles. I think any caregiver will feel that resonance, too. Those feelings of uncertainty, our reactions to the pitying looks, and our attempts to reconcile with the uncontrollable, while still trying to erect some sort of stable scaffolding for our loved ones. I get it; several others will too.
Thank you for your letter, Marina, and for your important work helping other caregivers. I hope more caregivers connect with you and your articles, especially spouses/partners and mothers.
I encourage you to read more of Marina’s work at The Together Hub:
A Full Weekend Just for Me, and the Feelings I Didn’t See Coming A weekend of freedom, joy… and a truth I wasn’t ready to face
Twelve Months of Holding It All Together What caregiving, waiting, and loving someone through illness taught me about strength, limits, and choosing where to place my energy
Author’s Bio: Marina is a mother of two young children and has been married for over ten years to a husband living with autoimmune diseases, a journey that led to a liver transplant and revealed her identity as a caregiver. With over 15 years of professional experience and having lived in four countries, she brings both depth and perspective to everything she does. She now channels both worlds into The Together Hub, a company dedicated to bringing caregivers out of invisibility.
The Word I Didn’t Know I Was
Dear Marina, of April 2025 in Lisbon,
Knowing you as well as I do, I know you would love to meet me. You’re probably wondering who I am and how I know you so well, so let me tell you straight away: I’m you, from the future.
Wow. I know you have so many questions. And as you always say, there are things you know will eventually happen, but if only you knew when, that would make all the difference to your anxiety.
So I’m here to ease some of that anxiety. I’m not going to spoil everything, but I will tell you this: the next 12 months will be some of the most challenging you’ve ever faced. And yet, they will also be the period in which you change the most.
Change is neither inherently good nor bad. But in your case, it is inevitable, and ultimately, it is beautiful. You will get to know yourself deeply. You’ll become introspective in ways you’ve never been before. And you will be so genuinely kind to yourself throughout it all that it’ll be a joy to witness.
I know what you’re living through right now isn’t easy. I know that receiving the news that Gu will be added to the transplant list, without knowing when, is terrifying. I know the thought alone is already triggering a panic attack. But here’s one thing I can tell you with certainty: the anticipation is harder than what you will actually feel when you get there.
Right now, the word “caregiver“ has never crossed your mind or your vocabulary. But in just a few months, you’ll be talking about it every day. It will become your work, your identity, your purpose.
Which brings me to the first big news: you will leave your current job.
You were never truly happy there, deep down, you knew it, but you were always afraid to admit it, let alone act on it (the end-of-month paycheck had a lot to do with that). I won’t tell you everything that unfolds, but I will say this: that chapter will become one of the greatest contributors to your journey of self-discovery.
Leaving wasn’t an easy decision. You had been feeling unlike yourself for a while, and it was seeing your kids notice it that became the turning point. You felt weak, alone, and like you weren’t good enough. But Marina, leaving that job was one of the bravest, strongest things you have ever done.
Because for the first time in a long time, you put yourself and your wellbeing first. And this is something you’ll learn throughout this year is not just important, it is essential. Not only for your own survival, but for the wellbeing of everyone around you.
I’m writing these words and reading them back to myself, hoping I’ve finally learned this lesson. Because the 2025 version of you didn’t fully know it yet. And honestly? Sometimes the 2026 version of me still forgets. 🙂
Now, let’s talk about friends, because some of them will prove just how close they really are.
Even the distance from João and Marcela won’t diminish the love you all share. You’ll find moments together, you’ll see each other, and you’ll still miss each other, and that’s okay.
And Paulinha. We all know she’s already important, but this year she will go above and beyond for you and your family, and she’ll do it while being pregnant! Yes! The news came at exactly the right moment: a burst of joy in the middle of everything you were all going through.
This will also be the year you feel closer to your family than ever. They’ll visit more often, and their support will carry you. You’ll feel a little irritated by the pitying looks and saddened by the worried eyes, but all of that will be eclipsed by the warmth and love you’ll feel and give in return.
And Gu, Pipa, and Pepe. They are everything, you already know that. But this year, you’ll feel it even more deeply.
You’ll want to make everything perfect for the kids, to shield them from what’s happening. Let me tell you: you don’t need to. Not even a little. You are going through this too. You have fears too. This is your story as much as it is Gu’s. So let yourself feel it sometimes. Let it be imperfect.
You’ll be demanding of Pipa, she’s the oldest, and you’ll lean on that without always meaning to. You’ll also start to notice Pepe growing up faster than you expect. But try, whenever you can, to just be with them. Laugh when they make a mess at the dinner table. Play with them. Be silly.
Because here’s what I want you to know: you will miss singing Aquarela to Pipa. You will miss the nights Pepe falls asleep on your arms, because by now, he falls asleep on his own and doesn’t want to be held like that anymore. Enjoy the little moments. They pass, and then they’re gone.
There’s something else about your family that you should be proud of and never take for granted: you never let the challenges become bigger than you.
Throughout this entire journey, you and Gu chose to be larger than the disease and whatever it brought with it. You kept living, really living, despite everything happening around you. You understood this as your reality, as something you couldn’t change. And so instead of collapsing under it, you decided to carry on alongside it. That was extraordinary to witness.
Let me close with a few spoilers, because you’ve earned them:
You will start your own business
You will help people feel heard and seen
You will consider moving to another country (I know, shocking)
This will be one of the years you travel the most
You will travel alone with Pipa and Pepe, a four-hour flight, to a country you’ve never been, and you will feel so powerful for doing it (as you should)
This letter has grown long, and I could keep going. But part of what you’ll learn this year is to live in the moment. You’ll have to face some of the biggest challenges of your life to grow into who I am today, and I wouldn’t take any of it back.
So I’ll close with the most important thing I can tell you:
Gu was added to the transplant list on November 30th. I know you can’t imagine it right now, but that day will be one of the happiest of your life. Not a day of fear, a day of relief, of possibility, of hope. The transplant was no longer a question of if, but of when.
And because I want to be kind to myself, and to you, I’ll say one more thing:
Gu has received his transplant. And he is recovering at home. 🙂
You’re going to be okay, Marina. More than okay.
By Marina, 2026
One last question to close the letter from Victoria.
Please share one quote/movie/book that’s inspired you?
Atomic Habits by James Clear. Throughout this year, it became more important than ever to understand the power of small, consistent habits, and how the right ones can quietly hold you together when everything else feels uncertain. Daily exercise, for example, was both life-changing and, in many ways, life-saving.
Prompt for discussion:
When did you first realise you were a caregiver, and did you ever give yourself permission to also be the one who needed care?
Please like ‘❤️’ the article to guide others here.
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