They can’t understand us because they would have to live it

More than 70% of the Cuban population was born under the United States blockade of Cuba. Photo: L Eduardo Domínguez / Cubadebate / Archive

A piece of news has made the headline in the Cuban press: For the first time, the total amount of damages caused by the US government’s blockade of Cuba, in one year, exceeds the barrier of five billion dollars . But how much does a number enclose? How much damage, how many truncated dreams, how much pain, how much resistance?

He who is silent kills

In 2015, Cuba and the United States made the return of their diplomatic relations official with the opening of their respective embassies for the first time in almost six decades. That same year, a blood sample traveled from Havana to Tel Aviv, to confirm the deficiency, in a 12-year-old girl, of the GLUT 1 protein, which allows sugar to pass into the central nervous system, bringing energy to the brain. In the north of Cuba, lives the scientist who discovered this disease, of which 500 cases had been diagnosed in the world until 2019, but the blood of Pilar, who has had to use a wheelchair since the age of three and suffers from seizures almost since she was was born, could not reach him. Nor be evaluated in a molecular study in his country, which did not have the necessary genetic sequencer. More than 70% of the Cuban population was born under the United States blockade of Cuba, the only one of its kind in the world for its duration; and Pilar, the only girl in Cuba who suffers from De Vivo Syndrome, is one of them.

To find the cause of Pilar’s neurodevelopmental delay, her parents had contacted Dr. Beatriz Marcheco, general director of the National Center for Medical Genetics, with whom they channeled the diagnosis. “I saw the doctor cry and her tears fell into the notebook and I told someone who was waiting for us at home: ‘Pilar’s genetic study is coming out because that woman is going to take it out,'” said the mother in the documentary Women … resilience, rights to life later.

To certify it, the Cuban specialists even maintained contact via email with the American specialist who discovered the disease, but the impossibility of acquiring any equipment or material with 10% of American origin , slowed the carrying out of the genetic study on the island , so Finally and after many efforts, it was made in a laboratory on the other side of the world.

De Vivo Syndrome is a disease whose expression is neurological, its cause is metabolic and its solution is a ketogenic diet that requires the use of a scale all the time to measure certain types of food and adapt them to the conditions of the country and of Pilar .

Normally in the world, with the advice of databases and products that Cuba cannot access, this already represents a challenge. In a blocked country, it is a father checking every day the operation of a special scale for when there is no electricity or a cyclone passes. In a blocked country, there is a father every Saturday at 23:10, the only place in Cuba where only one day a week they sell wheat bran, one of the sources of fiber that Pilar can consume.

But the United States is not the only country in the world that sells these products, nor is it the only country in the world where the effects of the blockade reach . On December 3, 2019, the multinational Nutricia, established in the Netherlands, refused to deliver to Medicuba an order for nutritional supplements and food for medical use in the dietary management of disorders and diseases, alleging the activation of Title III of the Law Helms-Burton.

Helms-Burton is a law that President Clinton imposed in 1996, when Pilar’s parents had not met. Title III was activated two years ago , when Pilar had just turned 15, and had danced in a pink dress surrounded by flowers and lights.

To counteract the effects of the diet, Pilar also needs thirteen medications a day and a total of 27 pills. In one year he takes 9 855 units of different medicines. Every day of those 365, from April 2019 to March 2020, the Medicuba company received the same response from the majority of the 50 American pharmacists that it contacted to request different medications: none . He who is silent also kills.

In 1975 the writer Gabriel García Márquez wrote after a tour of the Island: “We will forever keep countless lists of the sick who could have been saved had it not been for the blockade .  We will also keep the names of those who suffered the most pain, those who stayed in the hospital for a longer time, those whose health deteriorated faster, and Agustina, who was given the last four hours with her son diagnosed with Down Syndrome and now 32 years.

Agustina is a 69-year-old from Pinar del Río who stood in front of her baby’s incubator and told her: “No, you can’t die to me because I’m going to make you happy as long as I live.” Darien survived and was diagnosed with leukemia at the age of four, after which he was admitted for eight months and one year in isolation receiving cytostatic sera.

During the last year, the Radiotherapy department of the Institute of Oncology and Radiobiology has faced significant difficulties in purchasing new parts, accessories and cytostatics. Even though the entire network of hospitals and polyclinics suffer the negative effects of this policy, there are services that are more affected, such as cardiovascular surgery, orthopedics, oncology and kidney transplantation.

According to the recently released documentary miniseries, The War on Cuba , produced by Oliver Stone and Danny Glover, most of the measures that tighten the blockade dictated by the administration of President Donald Trump, have been announced on Friday afternoons. A day of the week when news production in the mainstream media is traditionally reduced. Darien, however, does not understand news breaks. Sometimes he gets up at 11 at night and wants to paint. Darien is a painter. So Agustina gets up, he paints and she watches television.

In 1969, the Uruguayan Mario Benedetti wrote in the Cuban Notebook : “The United States thought, not without reason, that the massive blockade and the prohibition of all Latin American countries from trading with Cuba would mean the defeat of the Revolution. But they did not have the decision, the spirit of sacrifice, the civic courage and the will to work that that same Revolution had instilled in the new Cuban man. That art of magic is, strictly speaking, the art of justice ”.

“It made me think, with a certain chill, that they really knew happiness”

Sports and culture are sectors traditionally affected by the restrictions of the blockade. Photo: Irene Pérez / Cubadebate / Archive

When Yarisley Silva started training he did it mostly on sawdust, as there was no jumping mat. Today she is an Olympic pole vault medalist. Omara Durand trained many times without shoes and without blocks for the starts, sometimes she still has to do it without the latter in the national preselection. Today she is a Paralympic athletics starter and considered the queen of the last decade in her category. Yerisbel Miranda learned to play chess at an academy where children took turns practicing with the few boards that were available. “La Chinita” is today an international teacher and was a national champion in 2017.

Sports and culture are sectors traditionally affected by the restrictions of the blockade . In the last period, the Cubadeportes company saw its capacity to import sports equipment of US brands diminished, many of them mandatory, as stipulated in the official regulations of the International Federations. The same is true in culture, where having new strings, ballet shoes or canvases can become a luxury.

The Prize of Plastic Arts, Liang Domínguez Fong, returns from each work trip loaded with brushes and canvases. In Cuba he does not have a way to acquire them. The first woman to graduate from Orchestral Conducting in the country, Zenaida Romeu, uses the strings of the violins that are discarded in other nations. In Cuba there is no way to acquire strings, access scores or buy gala dresses. The soloist of the Guido López-Gavilán Orchestra and ISA teacher, Denise Hernández, learned to play the cello with “just one stick”, as there was no instrument. When he finally had one, he was walking with him from his house through the Bus Terminal to the Paulita Concepción Conservatory along Calzada del Cerro, as there were hardly any buses.

The same is true in culture, where having new strings, ballet shoes or canvases can become a luxury. Photo: Ismael Francisco / Cubadebate / Archive

Benedetti wrote in his book Cuban Notebook : “If the State Department were so subtle as to warn to what extent the infamous blockade unleashed against Cuba daily serves Cubans as a stimulating provocation to find other resources, to invent other channels, to create other solutions, perhaps he would have modified his pressure style long ago ”.

Some would think that in the midst of an unprecedented pandemic, which almost makes it look like we are the actors in a blockbuster Hollywood movie, the pressure would change . The virus does not understand classes, but its treatment does. The virus does not understand countries, but access to mechanical lung ventilators, masks, diagnostic kits, protective glasses, suits, gloves, reagents and other supplies does. Only until April 2020 purchases and donations from Swiss organizations and companies and the Chinese Alibaba could not reach Cuba with some of these equipment.

The paradox is that when the channels to receive aid were closed to Cuba in March, around 40 countries requested help  to combat COVID-19 from the country blocked by the world’s leading power. The paradox is that being the government of such a large country they are upset by such a small one. The paradox is that you say that you do not block people, and they are the first blocked. The paradox is that by blocking the tangible, you unlock the intangible.

Abel Bajuelos says that we are “a country with almost genetic creativity”. Bajuelos is a Cuban self-employed person who during the harsh months of the pandemic used, along with other makers , his 3D printer to manufacture visors, swabs and valves in collaboration with state institutions. I had been doing it before, with prostheses for children, for example, one of the areas most affected for years by the blockage. Mitchell Valdés, in turn, is a renowned Cuban scientist who led the team that developed lung ventilators ” made in Cuba”which have saved the country “at least 10 million dollars.” Ana Fidelia Quirós, or “The Caribbean Storm” is an Olympic medalist in athletics who sewed and distributed cloth nasobucos to the residents of her neighborhood.

“A resistance that is confused with legend”. Photo: Irene Pérez / Cubadebate / Archive

Dr. Beatriz Marcheco would summarize it with one phrase: “The capacity we have had that our response is to fight for life.” As he expressed in the documentary about Proyecto Palomas: “We have developed a resistance that is epic, a resistance that is confused with legend . They cannot understand us because they would have to live it ”.

According to the father of the only person in Cuba with De Vivo Syndrome, a disease with which around 500 people have been diagnosed in the world, “it would be selfish to say that we have overcome something. In the first place, the one who has overcome the blow has been her. You always have to try to be happy with what you do, because you also have an extraordinary motive. You cannot live complaining about what life has put in front of you. We are not blocked parents. We live in a blocked country ”.

In 1975 García Márquez toured Cuba from cover to cover with his son Rodrigo and offered to pay him $ 50 for each person he saw without shoes. The only one he found was on the beach. But in addition to the shoes, Gabo was surprised by the Cuban miniskirts: “the smallest in the world: chilling,” he wrote. Even in the hardest times of the supply of shoes and clothes, Cuban women dressed in fashion, because, guided by magazines, they transformed their old suits, raised the heels to their shoes and prepared their own cosmetics.

“Necessity gives birth to twins. It is not possible to form a fair idea of ​​the Cuban Revolution without understanding how this new morality was forged on the night of the blockade, ”said García Márquez after his trip to the island, where he was accompanied by his son, a guide and “ a Intelligent and pachanguero driver who many times made me think with a certain chill of dread that he really knew happiness .

  • Part of the life stories of this text appear in the documentary of the Palomas Project, Women… Resilence, Rights to Life (2019), directed by Lizzette Vila and Ingrid León, which you can see here .
They shot us to kill, and we are alive. Photo: Irene Pérez / Cubadebate / Archive

In video, Women… resilience, rights to life

source: CubaDebate