Liliana -pure nerve and energy- passes the broom from one side to the other in a room next to the living room. She then opens the door to LA NEW SPAIN, from the Prensa Ibérica group, to a large room where you can see a kitchen with an area that seems to function as a living room. There she spends part of her days Marcel Sabou, prostrate on a wheelchair. Today (yesterday) it is at the back of the cabin. The residence of former international footballer with Romania, who left such good memories at Sporting in the 90s, has had a new guest for ten months: Mario Céspedes is one of the family. “We have been very lucky with him” -they say-. He is Sabou’s shadow. He offers him all the attention he needs. “It’s been ten years with ALS, and the disease is advancing.”
The progression of the disease has been especially aggressive in the last year. Marcel’s mobility is minimal. The former soccer player’s efforts to communicate lead him to make efforts to turn his head slightly to nod or deny, and to continually swallow saliva to try to make some sounds. The voice impairment is total. Mario -one of his children- and Lili -his wife- have developed an extraordinary ability to understand their language.
Mario Céspedes moves Marcel to the front of the cabin. The Sabou family shows a type of laptop with a screen. The tool is called Lamb, and allows the affected person to communicate using their gaze. The software translates eye movement into approximate movements within the screen. Marcel’s environment has programmed some messages to facilitate communications: “Hello thank you very much”… The application allows the former footballer to at least not need an interlocutor. But each movement with his gaze requires an added effort for Sabou, who ends up exhausted. It takes several minutes to link four words in a row. Liliana makes coffee.
-How are you?
–Marcel Sabou (hereinafter, MS). Well… At this moment the disease is already advancing rapidly.
–Have they been left aside?
–(MS nods). Completely. The state is not interested in investigating ALS.
–Who is responsible for paying for Mario’s services?
–Mario Sabou (hereinafter M.) Us.
–But does the administration offer any help?
–Liliana (hereinafter L.) Yes, the Principality gives me 150 euros for Marcel’s situation.
-Only? Don’t they offer you other financial aid?
–(MS) I have a pension, and a disability percentage. I have a 150% disability. Barbón made a campaign promise: he promised 15,000 euros per year to ALS patients. We have no news.
-I understand.
–(MS) My pension was 945 euros, and we have 150% for complete disability. In total we received 2,135 euros. But the 945 were for my pension. The difference is due to disability.
–(M.) Sure. They are just over 1,000 euros. But that money goes to Mario’s salary, who works all week. He is there 24/7, and only rests on the weekend.
–(L.) Without Mario I don’t know what we would have done…
–(M.) We take care of the rest (medicines, materials…) with the pension. The truth is, we are somewhat lucky. Our situation is better than that of other families because in the end dad was able to make some money from football. But other families…
There are those who, in addition to having to deal with ALS, which has no cure, also go bankrupt to pay for the care of the patient. The problem is to reconcile. Who takes care of the sick person when the person hired to provide care rests? In the end, many families are forced to stop working to offer the necessary care to the sick. And they get ruined.
–(MS) There are people who are totally ruined. They are sentenced to death.
The conversation now turns to a central topic right now among ALS patients. The debate on euthanasia. The right to die. To have dignity to choose the moment. Marcel Sabou intervenes again. There is silence.
–(MS) I am in favor of euthanasia. That people can choose their moment.
–(M.) I think that the right to choose to die should be on the table. It’s very good that one can choose. But first there must be help to live. Therein lies the problem, that ALS patients are not offered help.
–(L.) But we all cling to living, to life.
–(M.) There are people, in ALS patients, who need a tracheostomy. And you also need to have two people to take care of them. And pay, I don’t know, 5,000 euros. And he doesn’t have that money. What are you doing…?
–Has the illness caused you to cling to something? Are you religious?
–(MS) No. I only believe in science. I have always believed in science and at this moment I still think about science.
–Do you want to live?
–(MS) I have the desire to live and the strength to do so, but there are moments when I break down. I try to distract my mind on other things. I cling to life: hope is the dream of the waking man.
–You know that the disease has no cure. Who are you fighting for now with the InvestigativeLA campaign?
–(MS) I fight for my family. They are my greatest legacy. And because hopefully in the future people who contract ALS will have the opportunity to live.
2023-12-23 20:53:32
#Sabou #fight #people #contract #ALS #hope
