Chapter 6

Disabled

Illustration de Paloma Agüera

The first time we went to see him we became stars for a day. Some of them sitting at the doors of their homes, others having vermouth in the bars, in any of the streets of the village, in that summer morning, someone would stop us to introduce themselves and make a caress to my father: “but well”, said one with humor, “aren’t you going to introduce us to your children?”, “today you are finally in good company”, said another, “how they look like you!”, several others commented. We were walking with the last patient to arrive at the nursing home, a great novelty in a small village in the Sierra Norte of Madrid. My father, on that day we went to see him for the first time, had completed one week in his new home, the rehabilitation center El Hayedo, and had taken the opportunity, before losing his ability to walk, to visit every alley of Montejo de la Sierra, greeting his neighbors with the few words he had left and spending part of his salary to drink soda while reading the newspaper, if possible the “Marca” (TN – Spain’s national daily sport newspaper). 

– Who is that, Dad? – I would ask him when someone approached us and had a conversation with him through us.
– I don’t remember – he would answer with a blank stare, but politely saying farewell to the person in question. 

When we entered the shops, in a small bench, in a typical bakery, everyone called him by his name and the strange looks from others, who accused him so much in Madrid, here converted into mercy, as if the whole village was devoted to the mission of welcoming Huntington’s disease patients. We ate butter beans and sirloin steak in a bar, the typical, and celebrated the owners saying that my father, the new one, the last patient, come and go through Montejo as he did through Alejandro Sanchez, his lifelong street in Carabanchel. With a few stumbles and a few mistakes, but independent, getting used to the rural routine and having the confidence of knowing he was in a place that knew what it had. 

Going back to the center, however, my father was getting older while being the youngest, not always in age. In the courtyard, most of the patients did not articulate a word and their pants were bulging from their diapers. The entrance stairs, which he climbed with difficulty before showing us around the building, were a premonition: no traffic compared to the adjacent ramp where assistants moved other residents up and down in their wheelchairs. In the main lounge, few, those in the most incipient disease stage, struggled not to slip off the couch and end up on the floor, almost all the rest, with their head tilted and drooling an eternally pending slobber on the bib, were tied to their chair, to their armchair, to the clock hands. Occupying a space but nowhere at all. The center’s assistants greeted my father with condescension and, with the same caresses as the Montejanos, asked him if he “wasn’t planning to introduce his children”.

– What does the nurse help you with, Dad?
– I don’t know, I don’t remember.

In the shared room, his companion took a nap with his hands and feet bounded and protected from the bed rails with foam, pillows and double sheets. He had a bald spot on the back of his head and bruises with wounds all over his body. He slept, but he kept moving. He was hooked to two machines, one for eating and one for breathing. My father pointed to his bed, he also had wounds, but was not hooked up to anything yet. The walk around the nursing home was like casting the cards, reading the lines on his hand. 

That day he was due for a thorough grooming: haircut, nails, razor shave, dental floss. We didn’t want him to miss it, you never know when you will need to be completely presentable, even if it is in a rehabilitation center where he would spend the rest of his life disabled. We left before the sun went down, with a sunset hiding between the views of the residence, the Sierra del Rincón in the background, the poor sierra tiles, the persistent smell of butter beans being prepared for the next day. When we were leaving, the whole team of workers of the nursing home, my father with a big kiss, and other patients, those who could do it, walked us to the door, leaving an endearing image of their love behind bars. The village was already quiet when the curfew sounded at the nursing home, the grandparents asking, “and who do you belong to?”, the few children avoiding loose dogs with their bicycles.  

It could have been a good place to live.

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