“The ALS law cannot be put in a drawer”: María José Arregui, president of the Luzón Foundation
Maria Jose Arregui He was born in Molina de Aragón (Guadalajara). “He is a clear exponent of what we now call emptied Spain, with population rates per square kilometer similar to Siberia,” explains the president of the Francisco Luzón Foundation.
This region with extreme temperatures is often attributed a fierce character and that is why it is not surprising that later, in this conversation, Arregui defines herself as a strong woman. Her memories of her childhood and adolescence “are beautiful, happy, and those of us who have a town know what we are talking about,” many of them related to her early formative stages.
For Luzón, “education is the basis of the progress of a society. Note that in Molina de Aragón there was a high school since 1850, which was run by different religious orders: Piarists, Augustinians, also by an organization called La Común, which still exists and manages, among other things, the land, mountains and pastures of Molina and the towns of the region. Then it went to the State education system and in that building – so emblematic for the area – we have studied all the young people, taking a radius of students from the surrounding towns up to 40 – 50 km around.”
. I also remember advertising in the newspapers in the word ads section.”
His business project has given him “happiness, worries too, but the good outweighs. We have been pioneers in teaching Portuguese in Spain and Agoralingua It is a Caomões Associated Center and Official Portuguese Language Examination Center. Are reference in the teaching of Portuguese in Spain. Large IBEX 35 companies have learned Portuguese with us, we have won state tenders and right now we have public organizations learning with us.”
Luzón has worked as a “translator, first technical and then literary. Maybe I have a certain professional deformation because I like words and the precise use of them. What is said or written and how it is transmitted is what exists.”
The years he spent launching his project “were years of working hard and very intensely. Companies start calling me and there comes a time when my company is hired by Banco Santander, and there I meet Francisco Luzón and I start teaching him, an excellent student, with a lot of inner enthusiasm and that motivation led him to achieve great goals and put everything into it. And Portuguese was one more thing.”
As time goes by, “the life challenge I face is my husband’s illness.” The ALS (Amyotrophic Lateral Sclerosis) It is a disease that affects men more, but not in a very striking way, hence the historical condition of women, but also men who have dedicated their lives to caring for affected people.
Arregui remembers how “one of our first messages that we put on the Foundation’s t-shirts was ‘ALS EXISTS. Get to know HER.’” And it refers to a specific term, “the Responsibility of Love: caring for a sick person is an act of responsibility in love. I believe that one of the most significant characteristics of the human being is the sense of responsibility.”
He talks about the “normalization of family life, as the key that kept us going during the 7 years that the illness lasted. It’s easy to say, there were times for everything, but looking back, I think that flow of family life made it more bearable.”
Arregui continues with the story of his experience. “I remember that sometimes we would get angry, over everyday things, and I would tell him: ‘Honey, married couples get angry and then they are happy… That’s life, and we are alive and we are a couple with the ups and downs of living together’,” share.
“Paco,” he continues, “until the end he was excited about his founding project.” and I am sure that that, within his circumstances, gave him a lot of life, although it is paradoxical. From my humble opinion, the founding project that Francisco Luzón created, without wanting to be arrogant, put Amyotrophic Lateral Sclerosis on the social and political agenda. Now this project is nourished by ambassadors from all corners of Spain, and we continue working for this cause and promoting with the union of everyone and the Patient associations that the State acts to give a dignified life to ALS patients.
For her, A dream would be “that a cure is found for ALS patients.”, but a reality must be “that the ALS law meets the needs of the sick, politicians must be responsible, agree and create a rigorous and effective standard for ALS. The State as a higher entity, manager of social needs, must safeguard and take care of us, we must appeal to this higher responsibility.”
In his final words, Arregui shares with strength how “I am an optimist by nature, I have the happy moments that I have shared in my memory. Without realizing it, I have been erasing so much pain. Sometimes, when we meet sick people in the meetings we hold with the foundation, it affects me and I relive the restlessness…But I can say that that also drives me and my husband’s children to continue fighting for the cause, because we all carry within us the sense of responsibility and the safeguarding of the memory of Francisco Luzón.”
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