{"id":3205,"date":"2020-11-22T18:21:55","date_gmt":"2020-11-22T18:21:55","guid":{"rendered":"https:\/\/www.cubasupport.ie\/latest\/?p=3205"},"modified":"2020-11-22T18:21:57","modified_gmt":"2020-11-22T18:21:57","slug":"they-cant-understand-us-because-they-would-have-to-live-it","status":"publish","type":"post","link":"https:\/\/www.cubasupport.ie\/latest\/they-cant-understand-us-because-they-would-have-to-live-it\/","title":{"rendered":"They can’t understand us because they would have to live it"},"content":{"rendered":"\n
\"\"
More than 70% of the Cuban population was born under the United States blockade of Cuba. Photo: L Eduardo Dom\u00ednguez \/ Cubadebate \/ Archive<\/figcaption><\/figure><\/div>\n\n\n\n

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<\/a> . But how much does a number enclose? How much damage, how many truncated dreams, how much pain, how much resistance?<\/strong><\/p>\n\n\n\n

He who is silent kills<\/h3>\n\n\n\n

In 2015, Cuba and the United States made the return of their diplomatic relations official with\u00a0the opening of their respective embassies<\/a>\u00a0for the first time in almost six decades.\u00a0That same year,\u00a0a blood sample traveled from Havana to Tel Aviv, to confirm the deficiency, in a 12-year-old girl, of the GLUT 1 protein<\/strong>, 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.\u00a0More 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.<\/strong><\/p>\n\n\n\n

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\u00a0Women … resilience, rights to life<\/em><\/a>\u00a0later.<\/p>\n\n\n\n

To certify it, the Cuban specialists even maintained contact via email with the American specialist who discovered the disease, but\u00a0the impossibility of acquiring any equipment or material with\u00a010% of American origin<\/a>\u00a0, slowed the carrying out of the genetic study on the island<\/strong>\u00a0, so Finally and after many efforts, it was made in a laboratory on the other side of the world.<\/p>\n\n\n\n

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 .<\/p>\n\n\n\n

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.<\/p>\n\n\n\n

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<\/strong> . 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.<\/p>\n\n\n\n

Helms-Burton is a law that President Clinton imposed in 1996, when Pilar’s parents had not met.\u00a0Title III was activated two years ago<\/a>\u00a0, when Pilar had just turned 15, and had danced in a pink dress surrounded by flowers and lights.<\/p>\n\n\n\n

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.\u00a0Every day of those 365, from April 2019 to March 2020,\u00a0the Medicuba company received the same response<\/a>\u00a0from the majority of the 50 American pharmacists that it contacted to request different medications: none<\/strong>\u00a0. He who is silent also kills.<\/p>\n\n\n\n

\"\"<\/figure><\/div>\n\n\n\n

In 1975 the writer Gabriel Garc\u00eda M\u00e1rquez 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<\/strong> . “<\/strong> 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.<\/p>\n\n\n\n

Agustina is a 69-year-old from Pinar del R\u00edo 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.<\/p><\/blockquote>\n\n\n\n

During the last year, the Radiotherapy department of the Institute of Oncology and Radiobiology has\u00a0faced significant difficulties<\/a>\u00a0in purchasing new parts, accessories and cytostatics.\u00a0Even though the entire network of hospitals and polyclinics suffer the negative effects of this policy, there are\u00a0services that<\/strong>\u00a0are\u00a0more affected, such as cardiovascular surgery, orthopedics, oncology and kidney transplantation.<\/strong><\/p>\n\n\n\n

According to the recently released documentary miniseries,\u00a0The War on Cuba<\/em><\/a>\u00a0, 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.<\/p>\n\n\n\n

In 1969, the Uruguayan Mario Benedetti wrote in the Cuban Notebook<\/em> : \u201cThe 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 \u201d.<\/strong><\/p>\n\n\n\n

“It made me think, with a certain chill, that they really knew happiness”<\/h3>\n\n\n\n
\"\"
Sports and culture are sectors traditionally affected by the restrictions of the blockade. Photo: Irene P\u00e9rez \/ Cubadebate \/ Archive<\/figcaption><\/figure><\/div>\n\n\n\n

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.<\/p>\n\n\n\n

Sports<\/a>\u00a0and\u00a0culture<\/a>\u00a0are sectors traditionally affected by the restrictions of the blockade<\/strong>\u00a0. 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.<\/p>\n\n\n\n

The Prize of Plastic Arts, Liang Dom\u00ednguez 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 L\u00f3pez-Gavil\u00e1n Orchestra and ISA teacher, Denise Hern\u00e1ndez, learned to play the cello with \u201cjust one stick\u201d, 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 Concepci\u00f3n Conservatory along Calzada del Cerro, as there were hardly any buses.\"\"<\/p>\n\n\n\n

\"\"
The same is true in culture, where having new strings, ballet shoes or canvases can become a luxury. Photo: Ismael Francisco \/ Cubadebate \/ Archive<\/figcaption><\/figure>\n\n\n\n

Benedetti wrote in his book Cuban Notebook<\/em> : \u201cIf 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<\/strong> \u201d.<\/p>\n\n\n\n

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,\u00a0the pressure would change<\/a>\u00a0.\u00a0The 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.<\/strong>\u00a0Only until April 2020 purchases and donations from Swiss organizations and companies and\u00a0the Chinese Alibaba<\/a>\u00a0could not reach Cuba with some of these equipment.<\/p>\n\n\n\n

The paradox is that when the channels to receive aid were closed to Cuba in March, around 40\u00a0countries requested help<\/a>\u00a0\u00a0to 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.\u00a0The paradox is that by blocking the tangible, you unlock the intangible.<\/strong><\/p>\n\n\n\n

Abel Bajuelos says that we are \u201ca country with almost genetic creativity\u201d.\u00a0Bajuelos is a Cuban self-employed person who during the harsh months of the pandemic used, along with other\u00a0makers<\/a>\u00a0,<\/em>\u00a0his 3D printer to manufacture visors, swabs and valves in collaboration with state institutions.\u00a0I had been doing it before, with prostheses for children, for example, one of the areas most affected for years by the blockage.\u00a0Mitchell Vald\u00e9s, in turn, is a renowned Cuban scientist who led the team that developed\u00a0lung ventilators ”\u00a0made in<\/em>\u00a0Cuba”<\/a>which have saved the country “at least 10 million dollars.”\u00a0Ana Fidelia Quir\u00f3s, or “The Caribbean Storm” is an Olympic medalist in athletics who sewed and distributed cloth nasobucos to the residents of her neighborhood.\"\"<\/p>\n\n\n\n

\"\"
“A resistance that is confused with legend”. Photo: Irene P\u00e9rez \/ Cubadebate \/ Archive<\/figcaption><\/figure>\n\n\n\n

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: \u201cWe have developed a resistance that is epic, a resistance that is confused with legend<\/strong> . They cannot understand us because they would have to live it \u201d.<\/p>\n\n\n\n

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, \u201cit 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 \u201d.<\/p><\/blockquote>\n\n\n\n

In 1975 Garc\u00eda M\u00e1rquez 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.<\/strong> 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.<\/p>\n\n\n\n

\u201cNecessity gives birth to twins. It is not possible to form a fair idea of \u200b\u200bthe Cuban Revolution without understanding how this new morality was forged on the night of the blockade, \u201dsaid Garc\u00eda M\u00e1rquez after his trip to the island, where he was accompanied by his son, a guide and \u201c a Intelligent and pachanguero driver who many times made me think with a certain chill of dread that he really knew happiness<\/strong> .<\/p>\n\n\n\n