TEXT: FRANCISCO JAVIER SANCHO MAS IMAGES: LEAFHOPPER
The first thing is the light. That of this Thursday morning, while we wait inside (although it seems like outside, thanks to the glass walls) to be received by Carlos de Miguel, secretary of the NIDO Foundation. And, suddenly, we hear the music. It is only a sound test in a back room. Then, after a while, we see people wearing birthday party hats down the wide corridor. Héctor and Elena have turned 20 and 42, respectively.
That is the news. The great news that comes about thanks to the smiles and hugs, to (literally) five parents having set up this foundation, and to caring for small and big kids every day. And not flagging.
Sooner or later, all energy ends up taking shape. This energy, which is called NIDO Foundation and El Despertar Association, has taken over the former premises of a school in Aluche (Madrid), at one time a hospital, and known today as El Despertar. They cater to 60 people with cerebral palsy and severe functional diversity, aged three to 52 (Lucia calls herself the ‘veteran’). Apart from being a day center and school, El Despertar is the only permanent residence in Madrid for people with profound cerebral palsy. And the big news is that one of them, Elena, is 42 years old today. Wherever you go within the complex, the energy given off by the physiotherapists, monitors, parents, children and caregivers manages to augment the brightness afforded by the enormous windows which avoid the need for solid walls. There is also delicacy in the special pads or quilts used to cushion the contact with the residents’ soft skin, so prone to suffering pressure ulcers due to the lack of mobility.
“Wow, today is my party and Elena’s too!” says Héctor (of the two, the one able to speak) while he is being led off to celebrate his birthday.
Héctor attends the day center. But Elena is also one of the 16 who live day and night in the living quarters. Parties are common here, according to Carlos de Miguel, secretary of the Foundation, who acts as a guide today around the different sections of the center. “We have a joint celebration for those whose birthdays fall close to each other. If we were to celebrate them individually, this would be a constant party.” To tell the truth, it looks that way.
Elena is Carlos’s daughter. He is 76 years old. And now retired. He worked as an administrative lawyer “on the expropriations of half of Spain,” he jokes, defending many homeowners adversely affected by major public and private works. Marta (his wife) and he decided to bring Elena to the residence three years ago, given the physical effort and continuous care she needed. Carlos has the voice and poise of a Castilian gentleman. And when he refers to Elena, he calls her “My little girl”. Even though she is now 42. “Look at her, she’s a little girl, like almost all of them,” he adds.
Establishing a connection with many of these people reminds us of the inaccessible limits of language. Words here are merely part of the story. And this opens up an infinite world of gestures. Just imagine that the only way to communicate with one of your loved ones, with your child for example, or with your sister, is a smile, a look or caresses. The only way to decipher things, to get a response, to know we are here together, each one in a facet of life.
The magical connection
Elena suffered a stroke at the age of ten, while swimming in a pool. Since then, her brain has been disconnected from her body. She cannot move or talk, and requires a feeding tube. “After being hospitalized for two and a half years, we decided to prepare a medicalized room for her and take her home. A nurse warned us that we would be bringing her back to the hospital in less than a month. But, after a month, she began smiling and interacting like never before. There is increasing evidence that affection is just as important as — and complementary to — medical treatment. Real progress can be achieved regarding the quality of life of people like my daughter.”
He cannot converse with her. Instead of language, they established what Carlos calls a ‘magical’ connection, through the eyes and smiles. The question is how to choose the words to talk about her. “I used to employ adjectives or participles: ‘paralytic’, ‘disabled’, or a stronger one: ‘invalid’. When I’m asked about Elena, I say she’s my little girl. And if more questions are asked, I can explain that she’s almost the most loved. Her siblings, all three of them, understand and accept this. And I can say that she suffers from profound cerebral palsy, as she was left without living cells in her brain stem.”
The care offered to people with multiple severe disabilities nowadays means that those who previously died prematurely can now live longer and better. For this reason, the big news today is a figure beyond those of the costs, namely the 42 years that Elena, Carlos’s little girl, is celebrating. He does not know whether she remembers who he is when he looks at her. But he knows that she smiles, she likes his voice and her skin glows. And she is alive.