Grief is always ajar
Only by acceptance of the past will you alter its meaning.
– T.S. Eliot’s 1949 play, The Cocktail Party
‘My wife, my children, my life’, that’s what my dad wrote on his diary, filled with words to help us make sense of his life. That’s what he left us, scribbles on pieces of paper, big words that I could hardly understand at the time. It’s scary to be such a big part of someone – it’s also an honour that not everyone gets to have. We were his life, that’s a big thing to be.
How do you even prepare, for the final goodbye? Maybe that’s what he was trying to do with his diary, improvising the steps. It was his final letter to us, teaching us lessons that he wouldn’t be there for.
After his death, my mum was kind enough to ‘translate’ the text, to find the meaning in those traces and print all of its fourteen pages. How long is a life? How many sheets cover its story and meaning? My mum was a link, between us and him; as a mum, she’d always been. I wonder if that’s how she felt when translating a book, taking stories, facts and passing them on to an audience that otherwise wouldn’t understand. I am grateful she did that; she gave me a tiny piece of his heart, of his mind and thoughts. Now, I am writing down a little piece of mine – I haven’t lived that long.
Know your ending. That’s what they say in writing. I didn’t know it, but I remember it. I knew it would end, it does for everyone, but I didn’t know that it would end like that. You can’t prepare for death, but you can’t really prepare for life either. When we do reach that stage, the last breath, nobody wants to talk about that. When that person goes it takes speech away with them; there is no share button for grief. Silence becomes the soundtrack.
There is a gap, between him being healthy and then sick. Where are the nuances in my head? That middle bit. I believe the mind can only take so much, that it erases memories in our behalf, to make us cope. For a long time, I tried to erase some memories myself, now I am trying to make my peace with it. I want to mend things.
I was angry at the time because you are not meant to lose your dad at twelve; I am sure my mum wasn’t ready to be a widow that young either. Life was unfair, but mum told me we were lucky to have had him for as long as we did. ‘You can only appreciate happiness when you know pain,’ that’s what she told me. I wanted the pain to go away, I wanted an expiry date.
I remember him well, or at least I think I do. My memories and home videos look the same, I don’t know if the footage is from my head or from the tape. Records of our life were important to my parents, writing our heights on the walls, keeping letters, hanging our little drawings around the house. We were modern caveman leaving our marks in a 20-store flat apartment in São Paulo. It felt important at the time.
I wonder if that’s because my parents’ childhood hadn’t been recorded that well; I remember finding a box in grandma’s house with some black and white pictures revealing stern parents with serious looking children. I could hardly believe that the angry looking girl in the white dress was my mum. Having your picture taken must have been a big thing back then, it was a ceremony, it was like going to church – mum never liked church, maybe that explains the frown on her face.
As a family, we adored having our picture taken, it was fun, it wasn’t just special dates, birthdays and parties, my parents liked filming our day to day and, later on, so did I. When I was six, dad hesitantly handed me the camera that was the size of my face at the time – big gadgets, like they were in the nineties. I filmed my parents dancing; dad asked if he could kiss my mum and I allowed it, with a giggle. ‘I want to film everything,’ I said.
From an early age I wanted to register things, to reflect on the present and to keep a memento for the future; I wanted to be able to re-live moments through words and pictures. I filmed them dancing on the balcony and I thought everything was going to be okay. In a child’s life, that’s what we are supposed to expect, that things will stay as they are, that things will be the same, day after day.
He looked well then, with full hair. I remember combing his oily hair, admiring the shades of white and grey – that now I see on top of my own head. I enjoyed giving him a massage after a long day’s work; I am not sure I ever did a very good job at that, with my tiny hands, but he seemed to see the benefits of it.
‘Dad’ was my first word – possibly as a result of my mum repeating it all the time: ‘dad will be home soon’ and ‘here is daddy’. I don’t know what my brother’s first word was, but I hope it was ‘mum’ – you know, to make things equal, and fair. But life is not fair, I learned that at ten. João Manuel was many things, son, a brother, a dad, a partner, a friend. He was sick.
One day, he fell flat on his face. He was jumping over a rope in the garage and his foot didn’t move, it stayed there, against his will. Rebel leg, his body was organizing a coup against him. He thought ‘cancer’, because dad always thought cancer. He got a cold, it could be cancer, sore throat, it must be cancer. His leg started shaking and he couldn’t hold on, he was losing his grip on things – and on reality amongst them. It was cancer, it had to be, because he knew cancer and you can’t predict what you don’t have a word for, what you haven’t heard of before. Once you have a name you have a meaning, the world around you makes sense. Even if the news is bad, you want to know what to expect. The unknown is too scary to bear.
Motor Neurone Disease, that’s a very big name, I thought. My parents hadn’t heard of it, at the time, most people hadn’t. What did it have to do with his leg? They were told he didn’t have much time, that it moves fast; he wanted to find a stop sign, because he wasn’t ready for our life together to end. My mum decided to educate herself and to read up on it, ‘maybe knowledge will beat this thing,’ she must have thought. My mum wasn’t happy with her findings; ignorance is bliss, so it seems.
His appetite was gone, and the ability to eat and the shape that comes with it. The slurring of the words, the slow pace. His routine started to move in slow motion as the disease progressed. I looked at him in bed, a skeleton of a man – how did we get there? I’d see him lying on his chair, having refused to spend the day in bed. He preferred the commute, from bed to chair. I think he thought it was too early for that, to spend the day lying down, he wasn’t dead yet.
Dad kept trying to find a cure, a miracle, those work, no? He explored the uncharted waters of alternative medicine, defying reason and science, he was sure people got better from ALS, he wasn’t ready yet. He wanted to believe the treatments would heal him and my mum wanted so badly to believe in him. She told me they saw ‘doctors’ who bended spoons with the power of their minds. How is this going to help him? You can’t bend the disease.
In a pre-internet world, it was a lonely fight, search engines do offer an invisible hand when you are looking for answers. There were no forums or chat rooms then; we didn’t know anyone else who suffered from ALS – there was no ice bucket challenge, nobody was raising awareness for that.
My grandma went to church every day and prayed for us, that’s all she knew and that was everything she could do. Why him? I asked God every day. Do they need more angels in the sky? Can’t you get one somewhere else? I asked lying on my bed at night. I looked up trying to find Him, but all I could see was a white ceiling. It was a lonely battle for all of us, especially for him, day after day getting even more locked in.
Dad liked a project though, he started a bucket list for us, things he wanted us to do while he was still around. He had a flare for the drama, and he wasn’t going to leave without making a mark. There were experiences that he thought were important, that we had to had them – places that he wanted us to go to, but that now he couldn’t take us.
He asked my mum to take my brother to a football match, him being a massive fan of the sport. He couldn’t be there, but he wanted to see the sparks coming out of his son’s eyes as he described the ball moving from foot to foot. It was almost as good as being there. We had always worried for his heart whenever dad was watching a match; he got so carried away my mum thought he was going to have a heart attack. How could this Portuguese man be so passionate about the Brazilian squad?
In the ‘before times’, when he was well, we used to dance together to all sorts of music genres, creating choreographies, being each other’s best partner. He liked Chico Buarque, Nat King Cole and The Beatles, he liked moving to any sound. So, he asked my mum to take me to the Theatro Municipal, to see a ballet. It was a piece by Maurice Béjart and the dancers moved in ways I didn’t even know were allowed; expressing themselves through movements, a new language which I felt almost fluent in. He already had trouble walking then, dragging his feet. I saw those dancers up in the air, they were birds, not human. I wanted my dad to be able to reach those heights – or just cross the room on his own two legs – was that too much to ask?
A year into the disease he decided we were going on a holiday; he knew it would be the last. He wanted to be with us, when we took a plane for the first time. We had lived our lives on the ground, and he wanted to share it with us in the sky. I looked down as São Paulo became a blur and the people turned into ants; everything seemed so small, I wanted to be small like that.
We went to Florianópolis, I had never been to the South. I inhaled the breeze; I didn’t know you could be cold at the beach. We moved, leaving our footprints in the sand; he held his arm without looking behind, not wanting to glance at the past.
He had been born in an island and the beach felt like his natural habitat, the taste of salt that impregnates everything. He felt close to home when stepping on the sand, and he wanted to experience that with us, even if we were too young to understand. He always felt at home near the sea, he had crossed one to be here. That must have been what united his two homes, all that water in-between. He was again preparing for a crossing – the final one, depending on your belief. He always carried change in his pockets, maybe it was to pay Charon his fee.
Home and family meant a lot to him, and we were just that; ‘values’ is a big word to a twelve-year old, so he had to show me what he meant, take us to the places that he loved, show us what he cherished, make new memories for us to keep.
On that trip we ate so many prawns that I thought I might throw up – he did. Was he thinking of his last meal, when he’d stop being able to eat solid food, being fed via a tube? He was memorizing textures and tastes, saying goodbye to them, like you say to an old friend. He had grown up poor and the menu had consisted solely of potatoes; later in life he discovered all the colours and flavours of a rich menu, and now he was saying his goodbyes to the textures, and smells that changed his life, that fed him – not just his stomach, but his soul.
We walked up the dunes one day, my mum, brother and me; dad stayed behind, it was too steep. It was just the three of us and that’s how it would be for many years to come, we might as well get used to it. From the dunes I could see him waving at us from down below and I wondered if, when this was all over, he’d be looking down on us.
That day, my mum lost the car keys in the sand and we had to wait around for a spare one. It was funny, no one was mad, we were just happy to be there – we didn’t want it to end. We’d get used to waiting in the long run, waiting for a cure, waiting for a treatment, waiting for an answer, waiting for death. We didn’t want the keys to arrive, we wanted to stay there; we wanted to keep him longer with us.
And then, one day, he couldn’t walk, and we got used to that, as we got used to everything else. And even though he got smaller every day, his presence was overbearing and overwhelming, our lives revolved around him, and he was all I could think of. My mum wanted us to have a ‘normal childhood’ – whatever that means; but it wasn’t one, and it would never be. I made my peace with it.
It wasn’t an unhappy one either, I want to assure you of that. Some friends assume that I had a tragic childhood, but I remember the laughs and the love that I was surrounded by every waking hour of my life.
I’m not sure either of my parents had the happiest childhood and they made sure we got a shot at it – they did a good job. We played, we travelled, we fell, got hurt and rose up again. My dad had been active as a kid, his legs, running after a ball, getting caked in mud, the sweat on his forehead, all that activity. Who would have thought it would come to a standstill; that irresistible force became an immovable object.
‘Yes’, ‘No, ‘water’, ‘move’ – he blinked with his eyes. The doctors showed us a a system, a cardboard paper with all the letters and key sentences; mum would patiently write it down, to make sense of his needs. He had trained as a journalist, now his life was reduced to key words. That board full of letters with hidden sentences that he could hardly put together.
What was my dad’s last word? A full word that he was able to say out loud, like a child, being proud. It was an effort at that point, each sound coming out of his mouth was a product of intense labour. And by the end he could only blink. His eyes did all the work, his body immobile, his mind at full speed.
I could read frustration behind his eyes, reduced to a childlike state, with a whole life behind, without the perks of being young: having a future to live for. My mum told me once he was alive because of us, because he loved us so much. I cried, because I wanted him dead, because I wanted the pain to stop, because I loved him back.
I didn’t understand why he couldn’t just get better, wake up one day and rise up. It was hard for me to make sense of adults not having the answers, what did you mean by ‘no cure’? For every problem, there is a solution, that’s what I was learning at maths. Couldn’t the doctors just get better at it?
It was then that I realised that grown-ups don’t know everything, and I became scared – aren’t they meant to be in charge of all things? That’s the last thing that I needed, to be terrified at all times, of going outside, staying in, of living life.
His olive skin gained a new shade of white, with sickly splashes of yellow. He’d look at the sun, he loved it so much. The sun had been a constant in his life, in Madeira, it was always there, warm on his face while he stepped on grapes to make wine. He hadn’t lost it when he moved to Brazil, where it is twenty-five degrees for most of the year. And now he looked at it outside and he couldn’t walk up to it. Most of his day had turned into that, just staring at the things around him.
When I touched his arm, a shiver went down my spine, the elasticity of the muscle, gone; all it was left was flesh, fighting to hold on to his bones. I could see the ribs under his chest, sometimes even sticking out from under his shirt. Were they trying to flee? His body was not a hospitable environment anymore; his vital organs had given their months’ notice.
His white shirt was constantly covered in food, whilst he could still eat it. I can’t even remember how often my mum had to change him; I know it was an arduous process. To be fair, everything had become some sort of enterprise, actions that we take for granted due to our functioning bodies had been outsourced to my mum, my grandma and a nurse. They were in charge of his bladder and his stomach. When my parents got married, he’d promise to give my mum his heart, she took a lot more onboard.
My mum put food on the table, she went to work, she managed. She had left her career to look after the kids and now she needed it back to take care of him. On top of everything she had money to think of, bills to pay – school was the priority, I know that’s how they thought. And we lost a lot to make ends meet, but education, the thing my grandparents never had, they’d make sure we had that.
My mum once said that she never wanted to get married or have kids and then she met my dad, and he wanted everything. She ended up wanting all those things with him. They say, ‘in sickness and in health’, but how sick? I never doubted she would be there for him. Where did she find your strength, are you born with it? Is it genetic? Do I have it as well? I felt weak. ‘Till death us do part,’ and it did.
One day, he stayed in bed, barely moving at all, and my mum knew that was a bad sign. We went to see him in Hospital, for the first time – even though he’d been there before, many times. My mum wanted to shelter us from that experience, from seeing our dad on a Hospital bed, plugged to tubes, with the smell of morphine everywhere. She had spared us the sight of that, but we were there now, for the first and last time.
As a family, we had a habit of saying goodbye, when leaving a place: goodbye sea, goodbye tree, goodbye sand. My parents wanted us to acknowledge the experience, to cherish it. My mum was always very good at letting us know when to say goodbye, so we wouldn’t regret not taking the time. There we were, doing just that.
We sat near his bed and told him about our days, he wanted to know how it went. We talked about plain things because everything else was too big, because plainness makes life. I can’t remember saying ‘I love you’ but my mum told me later that I did. I hope that’s the case, if not, I also know he knew I loved him anyway. There is a type of love that doesn’t need to be said, no need for the board or the alphabet; it is just obvious like that.
He went on that same day – ‘to a better place,’ grandma said. Mum sat us down and told us everything. After that, my brother and I went for a swim. We didn’t know what else to do, how do children grieve? She watched us from upstairs; kids, they heal fast. We swam in the pool in calm waters because the world outside was everything but, because our minds couldn’t be kept still. All you can do is move.
I didn’t know how people got cremated, and I don’t know if everyone does it like we did, but it was peaceful. We looked at the coffin while music played. ‘Fado’ means destiny in Portuguese, that’s where the melancholic music style comes from; he always loved it. It felt symbolic to have it play there, we all have the same ‘fado’ in the end.
We buried him in Birkenstocks, mum knew he would have liked that, he’d want his feet to breathe. He looked so small, lying inside that coffin. He had never been very tall, but he looked tiny. There was a fabric over his face, a small net; it gave his face a weird texture. I kissed his forehead, cold like the beach in the south, I thought.
Life didn’t stop for us, so we’d go to school and friends’ houses; we still had tests, people still had birthdays. I had to make sense of the world around us carrying on, other people moving on with their lives; I could barely carry on with my life – carrying the grief within me. It was too heavy, it hurt too much, I had no space for it and my books. It was all-consuming and I’d lay awake late at night waiting for the day that everything would change, because magical things happen overnight. I wanted the world to stop spinning; how could life move on when I had suffered such a loss?
Once you experience grief, you live with it, it never leaves you. It’s there, in the back; it comes to mind from time to time – sometimes you think it disappeared. But don’t be mistaken, it’s always there. It changes shape, it morphs in different ways, and you get accustomed to it.
Years later, I asked my mum to tell me everything about him, about that time; I wanted to revisit it. What is wrong with me? Sadist, some would say. But I wanted to know all the angles, because at the time I lost my peripheral vision, all I wanted was to go ahead, move on, not dwell on the past.
Closure, I think that’s what they call it. Though you can never really close that door, can you? Grief is always ajar. I learned that looking back is not that bad, my mum taught me that. Why are we so scared, to talk about death? Why do we allow it to gain strength, this fear; it gets to massive proportions, making us feel weak. So, we bury it, along with our dead; we don’t even visit it, we are too scared.
But I wanted to look at it, I wanted to have the strength to do so; there was so much I didn’t know, I had been too young at the time and I wanted to dig up the details of my life. I wanted to know more about him, and to do so, I needed to open the wound. I don’t think I got to the end yet, there is so much past. But now, I have a better image in my head, about how we lived, how we lost him, and how we learned to live again. I like to celebrate that we were happy one day. We still are and we still will be, in different ways, never in that one again.
He never did finish his diary; ALS forces you to jump too many pages at a time. But he created his own narrative, a novella it might have turned out to be, but a great one. Those pages meant a lot to me, a record of a time and a place, of a person and how he saw us and himself. A special time capsule on sheets of paper, or on a computer screen. Some people go to church, some people read, we are all trying to get close to something, aren’t we?
Dad wrote that as a 10-year-old I was a very cautious child, always analysing the ground I’d be stepping on. Once I had done so I’d pace around proud, confident of my route. I suppose that’s what I’m doing now, laying the foundations to the path I will take, looking around, to all sides of life, because I want to run, jump, and live to the fullest – because some of us can’t. Time is precious, I have to make the most of it.
‘Chronos’, that’s what I got tattooed on my wrist a couple of years ago. I know my mum approved it; I think so would he. Time cures all wounds, time is relative, time moves in mysterious ways, it takes different shapes.
I am still climbing those dunes, one day at a time, the sand moves behind me but there is always more ahead of my path, so many grains, I can’t even count. If I look down, I can see him, waving at me, encouraging me to go further. Looking back to be able to look forward; one step at a time, we climb.
Mariana Serapicos is a Brazilian writer and filmmaker living in London. She has recently won the TogetherintheUK (TGIUK) 2021 Story Telling Competition with her essay ‘9 Lives’. Her essay ‘Flat,flat,flat’ was short-listed for Dissonance Magazine’s Covid 19 Competition.