Susana Moreira Marques - Now and at the Hour of Our Death

was it June or July?

was it August?

I’m reacting very strangely, the littlest things make me want to scream. It’s not that I want to start sobbing or anything. I feel like hitting people. One day, this little old man came to the courthouse to complain, he was fifty-something, sixty. I went to talk to him, I was being friendly, and he just started whining, ’cause he’s broke and he’s got so many problems and his son is getting his master’s degree, and he’s worried he won’t be able to pay for his son’s master’s, and it just started getting to me. And I said to him: ‘Look, you need to go to a lawyer and do this and do that.’ And he wouldn’t listen to me and he just kept on whining. And that started messing with me, I looked at that bastard and thought to myself

you son of a bitch. Do you even know what real problems are?

I pictured punching him. All I know is that I looked at that man and felt such hatred… I just had to say to him: ‘You have no idea what real problems are, get out of here! You’re lucky you’re alive and that you have a son who’s getting his master’s!’ And I kicked him out of there. And everyone was staring at me. As soon as I sat down, these tears, nervous tears, started running down my face, they weren’t out of sadness, they were just tears of anger, and they wouldn’t stop falling. With my mother and my boyfriend, it’s always on the cards. Everything they do annoys me. Everything they don’t do annoys me. Everything they say, the way they say it, annoys me. It’s like I’m constantly boiling up inside, while also trying to be reasonable and thinking:

but how is any of this their fault?

I try to be rational, but there’s a part of me that needs them to understand. And then, when I stop thinking about myself and I think about my mother, I wonder

how is she doing?

She must be so much worse off than me, and then I think I’m never going to give her a hard time again, never again, and then I see her and she says something and I explode.

I try to keep calm and get everything done. It takes a lot of effort, so much effort. I still haven’t passed my law exams, my future seems so uncertain, and even though I believe strongly in so many things, my future seems really far away, like I’ve pressed pause on it. I don’t have a job yet, and I don’t have my dad to give me a hand. My mom was never independent, never had a job. It’s not going to be easy for her to get her life back together. She needs me. I feel like there’s this huge weight on me. I’m trying to do everything and organize everything. And I feel as though I’m failing, and I do stupid stuff sometimes, which really annoys me.

I miss my dad the most when I can’t fix a situation. Even if he couldn’t fix it himself… But whenever I’m upset, I immediately think of my dad. My dad was the one I’d talk to, the one who’d say the right things. And that — that’s when I miss him. And so I think that the only thing I can do is try and make things run smoothly. And try to get everything done.

When I started the whole deal of moving to Porto, I had to face the facts because my dad would’ve been the one to help me out. He would’ve been the one to fix everything up in the apartment. I brought tools with me. The first holes I tried making, they… I was so anxious… I’m getting things done… In the beginning, I’d be doing something by myself and I’d feel like my dad was by my side, as if I was doing these things with him, and that gave me strength: because I pretended I still had my dad. I pretended night and day, all the time. But then it all started feeling distant. And I couldn’t pretend all that well anymore. And now something strange has started happening — it’s like he’s inside me. I know it’s nothing paranormal, that it’s all in my head, but even so it’s really strange. I’ll be kneeling, laying down some mortar, or hammering something, or tightening a screw… Or I’ll have put the wall anchor in and I’ll be tightening it… And the way I hold the screwdriver, the way I breathe, the expressions I make from the effort, everything, everything I do feels like how my dad would do it. It’s like he’s inside me.

I’m really selfish when it comes to my dad. My dad is mine. I was the one who knew him. And sometimes, when it comes to my mom, I’ll say: ‘Ok, you’re the one who was married to him for thirty years, but there’s a lot about my dad that only I knew.’ I was the one who knew what he liked. Of course it’s kind of subconscious, but it’s like I want our relationship to be untouchable.

My dad died in peace because he lived a full life. And that brings me peace. Now I always think about how anything can happen, at any moment, so you’ve got to make the most of it.

If I ever have a son, I’ll name him Rui.

‌

‌When You Come Back

from the Journey no Healthy Person Wants to Take, You Will…

‌

watch the clock and finally see time passing;

know you are a machine and not feel saddened but, rather, liberated by the thought;

read obituaries about anonymous deaths and feel responsible, as if you’d known them;

remember those you’ve lost who did not die a good death and promise yourself it will never happen again;

make sense of the frantic makeup of your days;

share the corniest things you can remember with those closest to you;

want to get married and have children if you have not yet done so, and if you have, spend more time with them;

feel strong, since it will become clear that to do so all you need is to be alive;

want to amend the future if you can no longer amend the past;

live uninterruptedly, like nature;

rather than believe the world ends with each death, believe that, with each birth, the world begins anew.

I would like to thank the Calouste Gulbenkian Foundation for supporting the writing of this book and its first Portuguese edition. I would especially like to thank Jorge Soares, Director of the Gulbenkian Programme for Innovation in Health, for believing in my work and in the value of sharing these issues and stories with a larger audience.

I am indebted to the Home Palliative Care team working in the Planalto Mirandês, Trás-os-Montes, for so generously allowing me to be a part of their routine, and particularly to Doctor Jacinta Fernandes, who welcomed me like an old friend.

The patients and families who feature in this book spoke to me with extraordinary openness, unexpected trust and admirable courage: thank you all so much.

Special thanks to photographer André Cepeda for being my travel companion in Trás-os-Montes and for his unforgettable images.

I could not have completed this book without my friend and fellow writer Alexandra Lucas Coelho, my friend Bárbara Gomes, who is a leading researcher in palliative care, and my family: thank you.

‌

Dear readers,

We rely on subscriptions from people like you to tell these other stories — the types of stories most publishers consider too risky to take on.

Our subscribers don’t just make the books physically happen. They also help us approach booksellers, because we can demonstrate that our books already have readers and fans. And they give us the security to publish in line with our values, which are collaborative, imaginative and ‘shamelessly literary’.

All of our subscribers:

receive a first-edition copy of each of the books they subscribe to

are thanked by name at the end of these books

are warmly invited to contribute to our plans and choice of future books