Mariano Lopez He died of ALS two hours after bursting into tears when he saw the documentary that shows the last three years of his life, shot by a friend to show society the harshness and obstacles of the disease, but also the courage and optimism through family support.
Filmmaker Miguel Marti shows in “Captain Nemo” the last years of his friend’s life, a film “very hard, but full of hope“Which aims to disseminate what amyotrophic lateral sclerosis is and the problems encountered by those who suffer from this disease,” he explained in an interview with Efe before presenting the film to the 66th Valladolid International Film Week.
Hospital visits, massages, constant deterioration, caring for his family, problems with wheelchairs or obstacles in the street make up a documentary that is the last cry for help from Mariano, who devoted his last years to activism. against an illness with which he shared a birthday.
The proof is that when he celebrated his half-century on his last birthday, on June 21, which coincides with the International Day against ALS, Mariano lived that day with the Luçon Foundation, walking through the city of Madrid and its monuments dyed green.
The documentary reflects the importance of the patient’s family and the need for resources to meet all costs of treatment, chair or caregivers.
“I felt that you had to be very lucky to have the support of the family. If you are really alone and depend on the institutions, you can have a lot of problems.”, says Martí, of the criticisms reflected in the film by the Luzón and adELA foundations.
As an example, the director recalls that after having sent several letters of request for help, they sometimes arrived when it was no longer necessary, as when Mariano received a chair in the phase of the disease that prevented him. already to move.
The director insists on the need to communicate when it was no longer possible to speak or move, and in this sense he asks the administrations to provide the technology which makes it possible to control the computer by the eye, a device which is marketed by one of the film’s collaborators. , the Irisbond brand.
Martí praises Mariano and his “The strength, courage and enthusiasm to help and fight for others”, an optimism which makes a film which is a priori complicated an example of “the will to fight and to live”.
The importance of family support led them to “show the optimism and joy of Mariano, but then in another room to shed tears and feel frustrated”.
Like Martí’s own experience, who knew López for having worked together in the audiovisual sector, the shooting was “Hard, but very beautiful” because he considers that he made the story that Mariano wanted to tell, a documentary that he attributes to the work of the two.
“The documentary shows how the human being is beautiful, faced with the imperative need for help, people tilt their shoulders, they are altruistic”, defends the director, who tells how the protagonist’s brother-in-law saw him a few times a year and in the face of illness “He took him home and treated him like his own son”. EFE
ags / rjh