la rebelión consiste en mirar una rosa

hasta pulverizarse los ojos


Alejandra Pizarnik


ETIQUETAS

José Pulido, the poet, journalist, writer: “I'm like a castaway clinging to his tongue” / Interview by Viviana Marcela Iriart, Genoa, June 16, 2020

 


José Pulido. Photo: Vasco Szinetar


José Pulido was part of one of the most beautiful and beloved traditions in Caracas: Sunday, buying the papers, having breakfast at the bakery, going up the Ávila, enjoying the blue butterflies and the singing of Quebrada Quintero, spreading the papers among the stones and then… José Pulido and his interview completed the happiness of the day. It did not matter who he interviewed, because the real pleasure was reading him. And my friends would go: what does Pulido say? Have you read what Pulido said? Pulido is so wonderful! Pulido was the main character. Then came the person being interviewed. Because reading José Pulido is good for you. It gives you joy. It makes you think. Because José Pulido writes with humor, tenderness, compassion, intelligence, love. José Pulido the poet, the writer, the journalist. The interviewer who created a new style. The kind, simple and tender man who creates bridges for people to meet, to cross, to discover the other side of their side.

 

José Pulido, who does not deserve to be exiled like he is today, walking around Genoa while he goes around Caracas.

 

And José Pulido is also Carlos Giménez, who he and I love so much, and that beautiful article he wrote: Carlitos sin olvido (Carlitos without oblivion). And he is that marvelous interview he just made to another wonderful and beloved figure from Caracas: Rolando Peña.  An interview that is like a story written with four hands.  An interview that is like a love letter.

 

And José Pulido is this poem of his, which I find while I'm writing this and then I'm out of words.

 

 

THE OLD SONG

 

Before antiquity arrived

the birds that died

turned into carnelian and tourmaline

John claimed in the Book of Revelation that the face of god was made of jasper and carnelian

birds probably made one of their best graveyards in that face

 

All mountains have been built out of birds' ancestors

 

From a yellow, blue and green bird

who dies when put in a cage and sings in beautiful fury

the mountain of Caracas was born creating ripples of water and branches

 

the Ávila of stones and roots, spit with Pleiades

is our most concrete mountain

 

I wish I could sweep its pathways with a broom of dreams

clean them up of all miseries

 

It is so big it could only fit into the universe once

when the heavens dilated

so that mangos could bloom

 

hummingbirds in the Ávila seem as if they were invented by Borges:

they fly backwards because they care more about the beginning than the end

 

the Ávila is huge but it is not so hard to carry in a bag

it is completely portable when carried as a feeling

especially if you have looked at its mermaid-like curves,

its crests resembling a resting animal

Or if you have ever heard the waters talk in Quebrada Quintero

about how to go down to the Caribbean Sea without having to ask for

directions in the valley

 

In the afternoon the mountain opens its eye made of sun

An eye that falls asleep on the voracious head of dry trees

at night it crouches with its breath of burning plants

ready to jump again on the fearful valley with its rabbit heart

this is the mountain that feeds on looks

that on the beach side is the Ávila of Reverón

deranged by light

and on the Caracas side is the Ávila of Cabré

borrowing the iridescence of the sparkling hummingbird

and all Pleiades sneeze with love when molasses grass stirs,

the delicious herb

and at the top and the bottom it is the Ávila of everyone and no one

a mountain that is like the Virgin of Coromoto and the Virgin of the Valley

like La Chinita and the Divina Pastora

because you do not have to know its pathways

to believe it represents our customs

 

The mountain was a bedroom for clouds a million years ago

and it still is.

The mountain was there making guacharacas

before anyone even thought of building the wall

that we would call town;

this ancient air is what comforts me.

The Ávila is a bird with apple mint in its wings,

it is the pain of fires kept within a case made of roots.

The Ávila is like saying amen when you pray for Caracas.

 

 

 
José Pulido, Salamanca, España.
 
 Carlos Giménez, Barbarito Diez, María Teresa Castillo,
Pablo Milanés,Miguel Henrique Otero, José Pulido...
"Macondo", María Teresas`s house


José, how has coronavirus treated you? What did you do during the quarantine?

 

I don't think coronavirus has treated anyone well. Fortunately I haven't got it because I'm always shut in writing and I only go out to walk up to the nearest mountain. I visit populated areas when I have to read poetry somewhere.

 

What was the first thing you did when the quarantine was lifted?

 

For me, it hasn't been lifted. I go out to walk but I wear a mask. Here you are fined if you don't wear it in the street. I haven't had any plans for when we get to the end of this. Beer tastes as good at home as it does in the bar.

 

Are you writing anything? What?

 

Poetry. I do some interviews for amusement. Poetry is my constant passion.

 

What are your plans for the mid-term?

 

Not dying yet to see what things have changed.

 

When did you leave Venezuela and why?

 

In 2017. Because violence in the country has become institutional, completely institutional.

 

Did anything in particular happen to you or was it only tiredness after so many years?

 

I spent 17 years enduring the decay, the humiliations, watching so many friends and relatives die. Criminals, who have the green light in Venezuela, killed two of my nephews and a grandson. I no longer had any useful medical insurance for my wife and me. Neither did we have any medical insurance for our younger daughter and her daughter, the little granddaughter that we raised. It was tiredness but also a bit of common sense. We would have died really soon there. You would not be making this interview.

 

Had you ever imagined you would have to leave Venezuela?

 

Never. All the things you can miss are there where you were born and raised.

 

Why Italy? Did you choose it or did it choose you?

 

Our older daughter has been living in Italy for 15 years. And the poets from the International Poetry Festival of Genoa have encouraged me a lot. I've been invited to the event two years in a row.

 

What hurts you most about Venezuela?

 

That Venezuelan people suffer and suffer and there's nothing and no one that can do anything to stop it. That so many citizens still believe there's nothing wrong going on there, even when they see people eating out of trash and they constantly come across corpses, misery and injustice. 

 


“Anita laughs with fear halfway between unconsciousness and reality. 

A guard said he would make gloves with the skin from her buttocks 

and she answered that she would not stand that, 

that she preferred to know they would bind books with her skin.

 She wants to smoke and she wants to die.”

Pelo Blanco (White Hair) (extract) 





José Pulido and his brother Arnaldo


What do you yearn for most?

 

Family, friends, my routine in Colinas de Bello Monte. My cat who died.

 

Are you optimistic about Venezuela? Do you think you'll be able to return in the not too distant future? Do you expect to return forever?

 

I'm not optimistic because my age does not allow me to. I shall forever cherish the hope that Venezuela will someday be a country where decency and justice are something basic.

 

Is it a long time since you've been there?

I haven't been there since I came here. I only talk with friends and family on the phone.

 

 

I don't know any city where people love a mountain so much as Caracas. What is the Ávila for you? When did you begin to love it?

 

Going up the Ávila is like gaining a bit more life. When you're up there, you breathe differently. And then you look at the valley, the vastness. Everything looks so harmless and beautiful. In the 70s we already went up there when very few people did.

Anyway, I'll answer your question with an extract from a long poem I wrote to the mountain:

 

This ancient air is what comforts me.

The Ávila is a bird with apple mint in its wings,

it is the pain of fires kept within a case made of roots.

The Ávila is like saying amen when you pray for Caracas.

 



 
José Pulido and his wife Petruska Simme, journalist


I remember María Teresa Castillo opening the doors of the Ateneo in Caracas (and her home) for Chávez, and how he stole it from her some years after that. Did you fall, like her and most of the Venezuelan people, for his seduction and his anti-corruption narrative, or did you distrust him from the beginning?

 

If you read what I wrote during that whole time, you will know I was one of those who never believed in all that. I was disappointed early on with totalitarianism, with the contempt from both the left and the right for decency, justice, creation, critical consciousness. And it wasn't María Teresa who formed an alliance with Chávez - it was her son, Miguel Henrique. He made a mistake like so many others, and it's difficult to imagine how people can make mistakes with something that is so obvious... María Teresa was already affected by age and loss of memory. She was an extraordinary lady.

 

Don't you feel outraged by the lack of support from left wing people having political power in Argentina, Brazil, Uruguay, Chile, who were exiled in Venezuela in the 70s, who received support from the Venezuelan people and who now turn their back on that same nation? Four million Venezuelan people living in diaspora and those previous victims don't breathe a word; they keep supporting the Venezuelan dictatorship. As if Maduro was better than Pinochet or Videla. As if "El Helicoide" was better than the National Stadium. Does it make you feel outraged? Disappointed? Sad? Or nothing at all because you never believed in those victims? (Personally, I feel outraged)

 

I'm not outraged - I'm grieved by the lack of nobility and solidarity. But I don't understand how a murderous right-wing dictatorship can be any different from a murderous left-wing dictatorship. I stick to Human Rights. I'm not moving away from them.

 

Elisa Lerner said “Solitude is the writer's homeland” (wonderful Elisa). Is that your homeland?

 

My homeland is the memories of what I have lived with other people and the landscapes I have loved and still love.

 

Mother tongue is also a writer's homeland. And when you live abroad, you reach a point when you begin to lose it, when you start to think in the language of the country you live in and then... what language should you write in? Has it happened to you? Are you already thinking in Italian? 

 

I only speak Spanish. I only write in Spanish. Translations are done by poet friends who help me. I can't drift away from Spanish even for a second. I'm like a castaway clinging to his tongue.

 

Don't you speak Italian? How do you manage to go buy bread, have a coffee, ask where a street is?

 

What I mean is that I shelter in my language. That doesn't mean I don't speak other languages. But I don't allow them to change the way I express myself. Of course I handle myself normally in the street, I can communicate with others, but I can't allow myself to forget or confuse words. Not at this stage.

 


José Pulido, Jorge Luis Borges  & María Kodama, Caracas



“An almost transparent little crab, one of those that take on the yellowish color 

of sand, stops just between the thighs, on the round corners

 of the buttocks. It is shaking with fear, or who knows what, at the bottom 

of a cliff and if by any chance its view is wide enough and it can see beyond what 

its tiny size would allow, who knows what it would make of that part

 up there, where a pair of seashell lips open up revealing a cavern.

 The little crab and other creatures skirting the body rush away when

 footsteps gather round. It is an unsettling morning, with 

ants looking for rotten honey and human flesh flies,

 buzzing on every corner about the bad news of a woman 

who the morning found naked, raped and dead 

in the self-absorption of the beach.”

 

El Bululú de las Ninfas (The Nymphs' turmoil) (extract)

 




Carlos Pérez Ariza, Isaac Chocrón, Edward Albee & José Pulido, Caracas. 



 Massive success, massive international recognition has eluded you, and that is terribly unfair. But it's never late. Look at Ida Vitale, receiving the Cervantes award at the age of 94! Well, I hope you can live as long as you like, but that you are awarded and recognized soon, let's say next year at the latest. Are you angry about the indifference of big publishers, big awards? Do you need a Carmen Balcells? Is the Noble Prize one of your dreams?

 

The important thing for me is the pleasure I feel when I write what I want to write. What I value most is a reader who can understand what I do. Even if it's only one. The massive, what represents a lot of money and little sensitivity and consciousness holds no interest for me. I don't even dream about a municipal award. I think I could become the only reader who is connected with me. That does not guarantee creative quality, but I'm relieved by the certainty that I'm producing something that will someday be useful for others who feel like me.

 

Did you have a happy childhood? What were your mother and father like?

 

My mother raised us alone. Well - with her huge family close by. Ours was a happy childhood because there was a lot of honesty and humility. I had tuberculosis and lost one year of primary school, but it was a very nice time - they gave me books and brought me comics.

 

 At what age did you begin to write? And what did you write?

 

When I was eight years old. I haven't stopped ever since. I wrote poems. I learned to write sonnets, very outlandish, but they were good practice. Then I filled several workbooks with tall tales. I got a poem and a short story published in national magazines when I was a teenager.

 

How did you get into journalism? Why journalism and not baseball, for example?

 

I wanted to stay within writing and journalism was the ideal job for that. It's very hard to write something truly valuable if you're a professional baseball player, for example - you have to put all your energy into the game, you can't do anything else. You wouldn't be able to work on your writing, to master the writing skill. And you wouldn't be a good baseball player if you were not passionate about it.

 

Did you study in the School of Journalism or did you learn by working in editorial offices?

 

I'm a member of the professional association, one of those who started to work in newspapers in Venezuela before the School of Journalism was created. I was a national and local executive at the National Association of Journalists.

 

Did you decide to work full-time in journalism, and not in poetry and prose, because journalism provides economic stability, and poetry and prose don't, or because you truly loved journalism?

 

No. Working in journalism as a trade to support my family never prevented me from writing poetry and prose. Actually, it nurtured them in many aspects because in journalism you go through all social misfortunes and connect with the great source of reality itself.

 

You're one of the greatest interviewers in Venezuela and the rest of the continent. Did you have any teachers? Or did your style emerge on its own?

 

The truth is I read a lot of journalistic chronicles written by some of the Irish American journalists who later gave rise to what was known as New Journalism. But my main education was reading the greatest writers. My style was a reaction to cliché, to routine. I wanted to move people and to feel I was doing something moving for me.

 

From all the people you have interviewed, who were the men and women who impacted you most and why?

 

The man who impacted me most was a gentleman that was so nice and modest I could not believe it: I interviewed the spy who deceived Hitler. The spy who serves as an inspiration for so many novels and movies. It was a lesson on humility. García Márquez was also one of my favorites, because he tried to understand my interviewing style, and I took it as a friendly compliment.

 

Once I interviewed a woman who had been raped several times, in different years. She was like a magnet for rapes. Very painful.

 

I also interviewed a theater actress, a red-haired Polish woman - she was gorgeous, one of the most beautiful women I had ever seen. I was very young. And she received me in her dressing room. She was completely naked putting on her make-up and she demanded that I should ask her the questions right there because she could not waste any time. I was in a cold sweat. And I asked her the questions trying not to look at her. I stared at a wall. I interviewed a wall. And her answers were extremely smart. I admired the intelligence of this actress. And I'm still consumed by the frustration of not looking at her directly, even though she never forbid it.



 
José Pulido &  Lindsay Kemp


José Pulido, Italy



When you worked in the media, did you have enough time left for poetry and prose?

 

I've always got up at four o'clock in the morning. I still do. I used to write from four to seven and then I went to the paper. Spending time in the job you need to survive doesn't mean you'll cut or curb your poetry and prose - they're too powerful and vehement. Now that I can write without having to work I really yearn for newsrooms.

 

What distresses you most, a blank question in an interview or a blank page in a novel or poem? Or are you not distressed by anything?

 

I'm not distressed by writing. As Heraclitus would say, thinking is a sacred disease. All this is a sacred disease. What is truly distressing is not having enough time to keep reading and writing until you find something glorious that can shake humanity. Although humanity is already shaken.

 

 

 

“When its time comes the mist descends so much that it brushes the coffee trees. 

Spiders, reptiles, beetles, scorpions, mice, rabbits

 and all bugs go back to their nests and their caves when they hear

 the hissing of leaves being pushed aside: something subtle but overwhelming 

is going through the thicket.”

Los Mágicos (The Magic Ones) (extract), José Pulido

 




How is a poem born in you?

 

I feel something and I look for a word that will make it visible. Every word contains a civilization, a history, a universe. With a single word like water or stone or beer or bell you could write a whole book. Just think about all the things you know and you can think of with the word water.

 

 How is a novel born in you?

I come up with a story which then becomes only an excuse.

 

How is an interview born in you?

 

The moment I become interested in an interviewee.

 

How do you write? Do you sit in front of the screen and wait for ideas to rain down?

 

I'm full of mediocre ideas, like all humanity, but I constantly search for something stunning, which very often lies in simple things. Sometimes I'm asleep and I come up with something in my dreams, so when I wake up I write it.

 

Juan Carlos Onetti said that there are writers for whom writing is like being with their wife or with a mistress. For him, it was a mistress - he only wrote every now and then. What is it for you?

 

There's no point of comparison - I write every day. It's like breathing for me. It's an existential mechanism. Like those who get drunk and can't get away from liquor. If I had loved my wife with the same intensity and persistence and resistance with which I write, I would have made her very happy.

 

Are you writing your autobiography?

 

Never in my life would I write something like that. Poetry is enough for me.

 

Are you a believer? A religious person? Do you believe in reincarnation?

 

I believe that life is extremely beautiful and that death does not care because it has a different job. I believe that in everything you do, you should always start from a moral point of view. Fantasy and truth, fiction and reality contain beauties, and that is enough for me. I believe that language has made us what we are.

 

When you're not writing, what do you like doing?

 

I like reading loads of poetry and strange writers. In Venezuela I was fascinated by horse races and going up the Ávila. Here I walk, I go up the mountain and I wonder why they don't love racetracks in Italy. Watching a race with a beer in your hand is something you cannot beat. I like baseball too.

 

Poets and also many writers are often quite tragic or pessimistic or nihilistic or arrogant - they believe they are above the average just because they write, and some even dare to say that writing is a punishment: “When God hands you a gift, he also hands you a whip. For self-flagellation”, said Truman Capote, such a beautiful phrase but... really?

 

Without tragedy, we are done for. And what Capote said is a truth that many do not face. It's about being humble to be able to write something important. Because when you're humble you know where you fail, where you make mistakes, and how big you really are. A good creator, one that masters the art of writing, knows that only a reader who does not understand his inner level could take offense. Sometimes a book is too big for the reader, and the reader has to grow in order to enjoy it or understand it. Sometimes the book is too small and the reader has to make the writer grow.

 

Poetry is something different. It's a way of being and living. It is very high-level and requires the reader to have enough humility to accept that he has to climb a slope and that this is not a sacrifice.




"With my love", wrote José Pulido: his wife Petruska Simme


You write with humor, compassion, tenderness. In your writings, you always seem amazed by life. Curious. Reading you is good for people. It gives them hope. You seem like a kid astonished by the big and small things of life. Are you a 74-year-old little kid?

 

Yes. I'm 74 on the outside but, strangely, I got stuck at 18 on the inside. Sometimes I can't understand why I get tired, when not long ago, in 1970, I used to run 20 kilometers every day...

 

I admire the great things of life, like everyone else. Starting with life itself and with language, which reaches its highest point in poetry. But I believe that all the small things I have valued and still value have improved my existence and I'm thankful for that. Being able to look at a beach. Having a mango in my hands. Listening to Myriam Phiro or to Marlene Dietrich singing Lili Marleen with her dark voice.

 

In the pictures from the last years, however, you look... melancholic perhaps? Sometimes you look at the camera annoyed, like saying “But girl, when did Caracas become Genoa?” However, your look does not show the defeat or sadness of exiles - it's defiant.  But there's no joy. Your face is the opposite of your narrative. José, how do you feel? Is it hard to live in Genoa?

 

You're right. You know how to look and you know me. I'm an unrepentant melancholic. But I'm not unhappy. Anything can make me feel joy. A soup, a beer, a coffee, a conversation. I have always been like that because I was raised by women and a simple, large family. I never stop being me, even if it's not much.

 

How would you like to be remembered? José Pulido, the poet, the writer, the journalist, the humanist?

 

I'm a poet. But if they can forget me without resentment, I'll be satisfied. Being remembered is the most relative thing. When all the people that ever knew me have died, it will be difficult for someone to remember me. Unless they come across any of my poems or writings and feel there's something interesting there.

 

What question do you wish I had asked you but didn't?

 

I just like questions from friends. Like you. There isn't a particular question I would like to hear. Things happen and you cannot stop them. I believe in what I do but I can't make people believe in me.

 

In 1979 an exiled Julio Cortázar said in Caracas: “A day in my life is always a very beautiful thing, because I'm really happy to be alive. I have no intention of dying, I have the impression I'm immortal” (wonderful Cortázar). Would you like to be immortal?

 

I'd like to be immortal just not to give a fuck about days. But I'm mortal and that makes every day worth its weight in kisses.

 

Thank you so much, dear José, it was a pleasure talking to you. And let's have the next interview with a cup of joe, either black or with milk, at any Caracas bakery. With a cachito, of course. Stunned by the car horns and the heat. And the Ávila, always our Ávila.  In Caracas. Next time, in Caracas.

 

That would be so beautiful and wonderful I could make it one of my dreams. Thank you, my dear and admired friend.

 

 

©VivianaMarcela Iriart
 June 16, 2020
Translation: Luciana Valente
 
All photos courtesy of  José Pulido
 José Pulido:  Web  / Facebook



 Photo Garcilaso




JOSÉ PULIDO Biography:
 Venezuelan poet, novelist and journalist, winner of several awards in Venezuela and abroad. He currently lives in Italy. He has published various poetry and prose books. He was the editor-in-chief of El Diario de Caracas and he led the art pages in El Nacional (1981-1988), El Diario de Caracas (1991-1995) and El Universal (1996-98). He was a correspondent for the OAS and Venpres, and a counselor for the Sofía Ímber Museum of Contemporary Art.







“He saw her vanish, like a headless pink patch among the crape myrtles and the acacias in the street, and he realized he had no horse or money, just his boots and a classical guitar which already had a spider living in its sound hole.” 

 







 

“The postman slows down the bicycle by braking the rear wheel with his left foot. Smoke comes out of the worn shoe sole. He finally manages to stop by setting his big shoe on the sidewalk.


The house in Vedado is inserted in another dimension, that is why he cannot even capture the details and he feels glad - though he does not show it - when the door opens and a girl from this time appears to get the letter. He breathes a sigh of relief to the point that he returns sweating to the daily heat and dares to look squarely at the smiling inhabitant before getting on his bike and pedaling as if in a black-and-white film that breaks against the sun and the reverberation of the sea.”


La canción del ciempiés (The Centipede's Song) (extract).





“He pulls a face, practices a nervous dance and moves back like a dwarf joking around in a circus, although in the substratum of his memory he is only a child poking at his mother to make her love him. He lets himself fall on the soft wrinkled leather of the long couch and rests on the woman's shoulder. She straightens her breast and the trembling of her roundnesses sticks out, moved by an earthquake which starts at her blinking.” 

 

El Requetemuerto (The Utterly Dead) (extract).






“The cold of winter, of this winter in particular, which hits the Oranienburg concentration camp mercilessly, has started its task of chapping lips, burning ears and getting into bowels like a needle.

 

The Sturmbannfuhrer in this camp is a middle-height man who looks tall, with strong bones and white hair, and white eyebrows and eyelashes. He is a quiet albino who pushes the air with his jaw, and everyone repeats his rank and name with bitterness and unease: Colonel Von Dussel.” 

 

Pelo Blanco (White Hair) (extract)





“To this date, El Yimi has killed fifty-two people he did not know. He might have exchanged looks with some of those victims, at an X moment, market, bar, traffic light, bus window, but most certainly it was like visually bumping into someone, because senseless, distracted looks are what crowds are made of.

 

—Freaks me out, that shit... gotta get cleansed...”

 

Los Héroes son villanos tímidos (Heroes Are Shy Villains) (extract)





Source for biography and book extracts: José Pulido




THE OLD SONG by José Pulido

 


Before antiquity arrived

the birds that died

turned into carnelian and tourmaline

John claimed in the Book of Revelation that the face of god was made of jasper and carnelian

birds probably made one of their best graveyards in that face

 

All mountains have been built out of birds' ancestors

 

From a yellow, blue and green bird

who dies when put in a cage and sings in beautiful fury

the mountain of Caracas was born creating ripples of water and branches

 

the Ávila of stones and roots, spit with Pleiades

is our most concrete mountain

 

I wish I could sweep its pathways with a broom of dreams

clean them up of all miseries

 

It is so big it could only fit into the universe once

when the heavens dilated

so that mangos could bloom

 

hummingbirds in the Ávila seem as if they were invented by Borges:

they fly backwards because they care more about the beginning than the end

 

the Ávila is huge but it is not so hard to carry in a bag

it is completely portable when carried as a feeling

especially if you have looked at its mermaid-like curves,

its crests resembling a resting animal

Or if you have ever heard the waters talk in Quebrada Quintero

about how to go down to the Caribbean Sea without having to ask for

directions in the valley

 

In the afternoon the mountain opens its eye made of sun

An eye that falls asleep on the voracious head of dry trees

at night it crouches with its breath of burning plants

ready to jump again on the fearful valley with its rabbit heart

this is the mountain that feeds on looks

that on the beach side is the Ávila of Reverón

deranged by light

and on the Caracas side is the Ávila of Cabré

borrowing the iridescence of the sparkling hummingbird

and all Pleiades sneeze with love when molasses grass stirs,

the delicious herb

and at the top and the bottom it is the Ávila of everyone and no one

a mountain that is like the Virgin of Coromoto and the Virgin of the Valley

like La Chinita and the Divina Pastora

because you do not have to know its pathways

to believe it represents our customs

 

The mountain was a bedroom for clouds a million years ago

and it still is.

The mountain was there making guacharacas

before anyone even thought of building the wall

that we would call town;

this ancient air is what comforts me.

The Ávila is a bird with apple mint in its wings,

it is the pain of fires kept within a case made of roots.

The Ávila is like saying amen when you pray for Caracas.


José Pulido

Translation: Luciana Valente

 

 

José Pulido
Venezuelan poet, novelist and journalist, winner of several awards in Venezuela and abroad.







Karen Conquero, viviendo con artritis reumatoidea y una sonrisa: “El futuro es esperanzador” / entrevista de Viviana Marcela Iriart, Traslasierra, Argentina, 30 de mayo de 2021

 




 “Los médicos descubrieron conmigo una nueva enfermedad y la llamaron artritis idiopática juvenil poliarticular”

 

No hay nada que detenga a Karen, argentina, dos hijas, profesora de inglés, ni siquiera una enfermedad que a veces la paraliza de los pies a la cabeza. Hace 40 años que Karen padece artritis reumatoidea y a pesar del dolor que le produce, una sonrisa siempre está en su bonito rostro.


Valiente, luchadora, amante del rock pesado, viajera entusiasta, ella no deja que la enfermedad le quite las ganas de vivir.


La enfermedad  le ha quitado muchas cosas pero ella prefiere centrarse en lo que tiene y no en las pérdidas.  En los pocos meses que tengo conociéndola la he visto sufrir algunos ataques, y ni siquiera en esos momentos perdió la sonrisa ni el buen humor.


Karen es un ejemplo, no sólo para las personas que padecen cualquier enfermedad, sino especialmente para quienes no padecemos ninguna y no apreciamos el valor que tiene la salud.


Gracias Karen por compartir tu historia conmigo y por ser como eres.


 



“El médico me dijo que mi enfermedad era un problema mental, que la enfermedad sólo estaba en mi mente”

 

 

Karen, ¿qué es la artritis reumatoidea?


Es una enfermedad autoinmune. Esto significa que el sistema inmunológico, que normalmente protege al cuerpo de partículas externas, ataca a tu propio cuerpo. La enfermedad es también idiopática: no se sabe qué la produce. Los síntomas incluyen rigidez en las articulaciones, especialmente en la mañana, dolor, hinchazón y sensibilidad en las articulaciones.


¿La enfermedad tiene cura?


Ahora la enfermedad tiene cura si se detecta en el primer año. Pero en mi caso como la tengo desde hace 40 años, no es reversible.


¿Cuántos años tenías cuando te enfermaste?


Yo tenía 12. Comenzó cuando estaba practicando para un examen de Sipalki. Yo estaba acá, en Córdoba, practicando con mi hermana porque teníamos un examen de Artes Marciales. Y repentinamente sentí un dolor terrible en mi hombro y mis padres pensaron que había sido por un mal movimiento, producto de la exigencia de las Artes Marciales que estaba practicando. Pero luego, después de meses de estudios médicos, descubrieron que era artritis.


¿Cómo te sentiste con el diagnóstico?


Primero… yo era joven, tenía 12 años como te dije. Al principio no entendía lo que me estaba pasando, lo que me preocupaba era el dolor que la enfermedad me estaba causando porque era terrible. Yo no podía caminar y cuando podía tenía que hacerlo muy lentamente.  No podía dormir, porque el dolor era inmenso. Para mí fue como si alguien clavara un cuchillo en mis articulaciones y era muy pero muy doloroso. Cuando movía una articulación el dolor se calmaba por unos segundos y luego comenzaba de nuevo. Cada vez era más fuerte y más doloroso, así que yo movía esa articulación una vez y otra vez buscando alivio, pero luego el dolor comenzaba de nuevo cada vez más fuerte. Era como si alguien clavara un cuchillo en mi articulación y lo revolviera, era terrible. Entonces yo lloraba, lloraba mucho y sufría enormemente. Me ponía cremas, algo caliente sobre la zona y el dolor se calmaba por unos segundos o minutos y comenzaba de nuevo.


Al principio el doctor les dijo a mis padres que la enfermedad era reversible y que con tratamiento iba a estar mucho mejor, pero después, cuando yo tenía 18 años, los doctores confesaron que no iba a estar mejor. Al contrario, iba a estar peor. Fue un shock, porque además ellos me dijeron que mis articulaciones se iban a ir deformando día tras día, año tras año. Así que yo imaginé mi futuro en una silla de ruedas. Fue un mal momento, sí.


¿Recibiste tratamiento psicológico?


Los médicos lo sugirieron pero no hice tratamiento porque nunca estuve de acuerdo con los psicólogos.

 

¿Por qué?


No sé. Era una cuestión de internalizar la enfermedad a mi manera y tratar de hacer lo mejor que yo podía con ella. No había una solución… y los psicólogos no podían sacarme el dolor de mi cuerpo. Pero tuve que aprender a vivir con el dolor y aceptarlo. Fue difícil pero finalmente acepté mi enfermedad. Y ahora es como una amiga que algunas veces se enoja conmigo. A veces ella está de  mal humor. Pero afortunadamente a medida que los años pasaron yo entendí que tengo que pensar: bueno, hoy siento un dolor terrible pero mañana voy a estar mejor. Así que a veces lloro no por el dolor sino porque me enojo conmigo misma, pero rápidamente recuerdo que mañana o en pocos días me voy a recuperar.


¿Perdiste años de escuela secundaria por la enfermedad?


No, porque yo era una nerd. Y cuando yo tenía un ataque mis padres me llevaban a Córdoba donde el clima es mejor, es más seco que en Buenos Aires, entonces yo venía y estudiaba en casa acá en Córdoba. Porque mis profesoras sabían de mi enfermedad. De hecho, no pude cursar Educación Física pero sí el resto de las materias: yo estudiaba en Córdoba y luego daba los exámenes en Buenos Aires uno o dos meses después. Y no me ponían falta por no estar presente en las clases. Bueno, aunque asistí unos pocos días a la escuela pasé con las mejores notas todos los años. Y cuando estuve en el último año fui abanderada. Fue un gran orgullo para mí.


¡Maravilloso! ¿Estudiaste en una escuela pública?


Sí, en el Colegio Nacional de Quilmes, que en aquellos años era muy estricto…no era fácil pasar las materias pero yo amaba estudiar.


¿En qué hospital te trataron y qué tratamiento te dieron?


El primer doctor, un japonés, fue un cardiólogo, que dijo que era fiebre reumática y que iba  afectarme al corazón. Cuando él no supo qué hacer me envió al Hospital de La Plata, en donde conocí al Dr. Manzur, que era muy joven en aquellos años, y él investigó mi caso. En la actualidad el Dr. Manzur es una de las eminencias en artritis reumatoidea. Al principio yo era como una rata en un laboratorio, porque los médicos no sabían qué hacer conmigo, entonces me dieron corticoides. Yo fui a ese hospital por 4 o 5 años y al final me dijeron que habían descubierto que en Argentina había un millón de niñas y niños con esta enfermedad.


¡¿Un millón?!


Sí, un millón y los médicos no sabían por qué. Ellos creían que la enfermedad sólo afectaba a las personas mayores, no a las personas jóvenes, por eso mi caso fue tan extraño y se dedicaron a investigarlo y descubrieron que también afectaba a las personas jóvenes. Y un doctor dijo que yo tenía vejez prematura, sí, fue terrible. Bueno, yo te estoy contando de cosas que pasaron hace 40 años, y la ciencia avanzó mucho en estos años, pero 40 años atrás la medicina apenas se estaba desarrollando. Entonces un médico geriátrico me dio medicamentos para personas mayores, medicina geriátrica. Y me dio pastillas para dormir y fue peor porque yo estaba estúpida todo el día, dopada,  y en la noche, mi madre me contó, yo me movía todo el tiempo como una loca. Me dieron la famosa pastilla para dormir llamada Valium. El médico me dijo que mi enfermedad era un problema mental, que la enfermedad sólo estaba en mi mente, sólo porque ellos no sabían qué hacer con mi caso. Entonces algunas veces me daban pastillas para dormir, luego corticoides, medicina geriátrica, simplemente porque yo tenía una enfermedad nueva.


Los médicos descubrieron conmigo una nueva enfermedad y la llamaron artritis idiopática juvenil poliarticular. Este tipo de artritis puede afectar las articulaciones de la mandíbula y el cuello, así como las de las manos y los pies. Esta enfermedad también es más común en las niñas que en los niños y se parece más a la forma adulta, y afecta grandes y pequeñas articulaciones por igual. Si fuera artritis atacaría sólo a las grandes articulaciones o a las pequeñas, pero a mí me atacaba a ambas por igual, y eso tenía a los doctores muy confundidos. Ellos no sabían qué decir, no sabían qué hacer. Si hubiera sido  fiebre reumática hubiera sido mejor para mí, porque esa enfermedad tenía tratamiento. Pero no lo era.


¿Cuál es el efecto colateral de la medicina?


Bueno, yo tomé corticoides durante muchos años. Y ellos produjeron infecciones en mi piel, si me lastimo no me curo fácilmente y las heridas se convierten en úlceras, así que uso cremas especiales para prevenir las úlceras. Además perdí melanina y entonces tengo una especie de manchas blancas en mi piel producto de esa pérdida. Y no puedo tomar sol porque la melanina te protege de los rayos ultravioletas. Otro efecto negativo es la pérdida del apetito, porque el corticoide le mandaba un mensaje al hipotálamo y cuando dejé de tomarlo mi cuerpo dejó de recibir ese mensaje y  perdí la sensación del hambre.  Pero a pesar de eso, ahora estoy mejor porque dejé de tomar corticoides.


¿Entonces no puedes tomar sol?


No puedo pero debo, porque los huesos necesitan vitamina D, que la produce el sol. Entonces tomo sol con protector solar 80 y nunca entre la 1 y las 4 de la tarde, porque es cuando el sol es más peligroso. Ah, me estoy acordando de otra cosa que dijo el doctor geriatra: que probablemente yo me iba a convertir en un hombre debido a que tenía mucho pelo en la cara, en mis brazos y en mis piernas. En un hombre o que sería homosexual (se ríe), yo tenía 12 años y fue un shock. Por supuesto que mis padres no me llevaron más a ese médico y a mí me gustan mucho los hombres, sexualmente hablando.


¡Qué terrible!


Oh, sí, fue terrible.  Cuando yo tenía 18 años mi hermana estudiaba medicina en la UBA y conoció al Dr. Barceló, que era un experto en artritis. Él atendía en el Hospital de Clínicas en el centro y desde los 18 a mis 24 años fui a tratarme con él y con el Dr. Gibson, que era su asistente.  En aquellos años ellos intentaron diferentes tratamientos. Al principio me dieron pastillas de oro y al cabo de unos pocos años mi cuerpo se acostumbró a ellas y se volvió refractario. Entonces probaron con quinina. Mi cuerpo reaccionó favorablemente por unos pocos años, y luego el medicamento ya no hizo efecto. Entonces comenzaron con metotrexato, que es una droga que en grandes dosis les dan a personas que tienen leucemia. Pero yo sólo tomaba 3 pastillas por semana y me sentía mejor pero a la vez me caía mal al hígado, era como si hubiera comido 5 huevos fritos juntos. Y luego quedé embarazada. Yo tenía 26 años y dejé de tomar ese medicamento porque era peligroso para el embarazo. Así que durante 8 meses no tomé nada y sufrí muchísimo. Intenté con medicina alternativa, con la famosa “oreja de elefante” que es buena para calmar el dolor. Mi madre me preparaba té con esa hierba y yo me sentía mucho mejor pero al final terminé internada en un hospital privado con contracciones todo el día y casi pierdo a mis mellizas. Tenía 3 meses de embarazo. Los doctores estaban muy enojados conmigo porque casi aborto y gritándome me dijeron que no podía beber ninguna  hierba. Desde ese momento hasta que mis hijas nacieron tomé Dubadilán, que es un medicamento para prevenir abortos. Así que sufrí durante los 5 meses restantes de embarazo. Los médicos me dijeron que tomara aspirinas cuando no aguantara el dolor.  Y yo me quedaba en cama cuando eso me pasaba. Mi madre me cuidaba. No estaba sola.


¿Tu enfermedad afectó tus actividades de adolescente?


Sí, porque como te dije, antes de la enfermedad practicaba Artes Marciales y también jugaba básquet una vez por semana y tenis. Yo era una niña muy deportiva, me gustaba hacer cosas relacionadas con el deporte. Y también tocaba la guitarra. Dejé de hacerlo cuando se torcieron mis manos. Entonces comencé a hacer yoga cuando tenía 14 años y tuve que dejar hace 2 años porque el doctor me lo prohibió debido a que tengo una subluxación atloide axoidea, que se  puede operar pero la operación es muy riesgosa.


¿Qué órganos son afectados con más frecuencia?


En mi caso el hígado y el riñón. Es por eso que los médicos ahora me dan medicina biológica de alta tecnología, porque la enfermedad ataca tanto a las articulaciones como a mis órganos. Y me  inyecto esta medicina desde el 2009.  La primera medicina biológica que recibí fue Humira pero tuve una mala reacción alérgica. Entonces los médicos me dieron Enbrel y hasta ahora me resulta muy bien. Con este medicamento puedo tener una vida relativamente normal, así que estoy muy feliz con este avance de la medicina.


¿Qué es un ataque?


Un ataque comienza repentinamente y en pocas horas no podés moverte o es muy difícil moverte porque cada parte de tu cuerpo duele.  Yo siempre digo que me duele hasta el apellido. Cuando tengo un ataque dura entre 2 y 4 horas, pero tardo una semana en recuperarme. El proceso de recuperación es muy lento. Como me doy cuenta cuando un ataque está comenzando tomo diferentes medicamentos antes para tratar de reducir el dolor. A veces el ataque es muy fuerte y tengo que estar en cama varios días. Otras veces el ataque es más leve.  Vos nunca sabés hasta qué punto se extenderá el ataque. A veces ocurre que estoy en la cama en perfectas condiciones y cuando me quiero levantar no me puedo mover.


¿Qué necesita entender la familia acerca de la enfermedad?


La única persona en mi familia que no aceptó mi enfermedad fue mi padre, él creía que todo estaba en mi mente. Hay apoyo sicológico para apoyar a las familias porque a veces ellas no entienden por qué vos estás de mal humor. Y vos estás de mal humor porque vivís con tu enfermedad, con tu dolor. No ahora, porque con la medicina biológica yo no estoy dolorida todo el tiempo. La familia debe entender a la persona con artritis y ayudarla.  Por ejemplo, mis hijas no cerraban bien los frascos entonces cuando iba a agarrarlos, y lo hacía por la parte de arriba, los frascos caían al suelo. Pero mis hijas siempre entendieron que yo era una madre diferente. Cuando tenía un ataque ellas siempre me ayudaban cuidando de mí, haciendo las tareas de la casa, poniendo crema en mis articulaciones, me calmaban cuando lloraba, me ayudaban a ir al baño en la noche, me vestían, se preparaban su propia comida. Sharon y Ayelen, mis hijas, son lo mejor que hay.


¿Qué otros cuidados tienes que tener?


No tengo que resfriarme, hacer actividades fuertes ni levantar mucho peso, necesito dormir la siesta todos los días y dormir 8 horas por día, comer comida saludable. No debería tener preocupaciones, debo tratar de tener una vida tranquila porque esta enfermedad se ve muy afectada por las emociones o los problemas. Si vos estás enojada es muy probable que te de un ataque. El doctor me contó de una mujer que tuvo un gran ataque cuando supo que iba a ser abuela, ella se puso muy feliz y le dio un ataque. Él me sugirió que tratara de poner un aceite imaginario en mi cuerpo para que los problemas o las emociones me resbalen.


¿Tuviste problemas para tener a las mellizas?


Sí, fue difícil. Los médicos me dijeron que no podía tener un parto normal porque mis caderas podían separarse y no volver a su posición original. Así que tuve una cesárea y los médicos me pidieron que donara las placentas para hacer investigaciones y es lo que hice. Unos días después del nacimiento de mis hijas tuve un gran ataque, no podía moverme y los doctores dijeron que las placentas actuaban como un corticoide natural. No pude amamantar a mis hijas por el corticoide que entonces me dieron.


¿Qué consejo les darías a las personas que han sido diagnosticadas recientemente con la enfermedad?


Yo les diría que vayan rápidamente a ver a un especialista, porque hay grandes avances en la medicina. Actualmente una persona diagnosticada con artritis reumatoidea puede revertir la enfermedad en el primer año. Mi médico me dijo que están a las puertas de curar por completo la enfermedad. No en mi caso, porque hace 40 años que la tengo. Así que el futuro es esperanzador. Mi médico es el Dr. Jorge Luis Velasco Zamora, trabaja en el CER (Centro de Enfermedades Reumáticas) y él está al día con las últimas novedades sobre artritis. La dirección es Av. Vicente López 1441, Quilmes, provincia de Buenos Aires. Él me dijo que el mejor tratamiento es como los tres vértices de un triángulo: la medicación apropiada, tratamiento psicológico y ejercicios. Y yo sugiero a la gente que pruebe también con medicina alternativa como maca, sésamo, lino, chía y moringa para fortalecer su sistema inmunológico. Que tomen calcio para fortalecer sus huesos, no engordar y tomar vitamina D una vez al mes.


¿Cuál es el mejor clima para vivir?


Los doctores me dijeron  que el mejor clima es aquel que tiene poca variación barométrica, por eso decidí mudarme a donde vivo ahora, en las montañas de Traslasierra, Córdoba. Me siento mucho mejor aquí, el clima es menos húmedo que en Buenos Aires y no hay estrés como en las grandes ciudades, la vida es tranquila. Yo vivo más relajada aquí y soy muy feliz.


¿La enfermedad es hereditaria?


No. Pero los médicos dicen que quizás mis nietos o nietas pueden llegar a tenerla. Pero si esto llegara a suceder, la investigación estará muy avanzada en ese momento y no van a tener que sufrir como sufrí yo.


¿Puedes llevar una vida normal?


Sí, trato de llevar una vida normal. Manejo, trabajo, camino, hago trekking en la montaña, escribo en la computadora y a mano, hago ejercicios, corto el pasto –tengo un jardín muy grande-, tengo una activa vida sexual… y bailo rock and roll, por supuesto. Estudié Astronomía en la Universidad de La Plata, luego el profesorado de Inglés. Todo lo que hago lo hago a mi propio ritmo. Y soy feliz.


 

©Viviana Marcela Iriart

Traslasierra, 28 de Mayo de 2021

 


CER (Centro de Enfermedades Reumatológicas)

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Luis se fue, por Viviana Marcela Iriart, 6 de junio de 2021

 






 

Luis Sedgwick Baez, mi querido y leal amigo, fuente de tanta cultura y conocimientos, se fue. No a cubrir el festival de cine de Toronto, Cannes o Berlín. No a conocer lejanos y exóticos países. No a su casita de la playa en Machurucuto. No a la selva ni al desierto ni a Nueva York ni a Buenos Aires. No a perderse en la escritura o lectura de un libro. No a una exposición de pintura o una obra de teatro. Luis se fue para siempre. El pasado 26 de abril.


Y creo que la mejor manera de recordarlo, de tenerlo siempre presente, es a través de sus palabras, de sus críticas de cine, crónicas de viajes, novelas y obras de teatro.


Luis se fue. Pero su arte, su arte perdurará para siempre. Como su presencia, entrañable para quienes tuvimos la dicha de conocerlo.


Luis se fue, pero nos dejó sus pensamientos plasmados en palabras. Aquí están algunas de ellas.


Querido Luis, esto es para ti.


Y para quienes te queremos.



Toronto: Siete años de cine

Por los lados de Hong Kong

Por los lados de Kavafis

El enigma de Federico, novela (fragmento)

El TIFF y su proyección

Susy Dembo por siempre

Semblanza personal de Luisa Richter

Las tribulaciones de Paco

 

 


© Viviana Marcela Iriart

6 de junio de 2021