On Monday I sat down again in a conference room to listen to Juan Carlos Unzué (56). It happened in the wonderful Hospital de Sant Pau.
In recent times, I have spoken with him on a few occasions. In 2020, a few weeks before we were confined, he received me at his house in Sant Just Desvern. On another occasion we talked about the biography that colleagues Ramon Besa, Lu Martín and Marcos López had co-written: “Unzué, a full life” (GeoDestino). From time to time we share a message on Whatsapp.
Whenever we see each other, Unzué spends the time smiling and asks me about my things.
From his wheelchair, he tells me:
-Are you still running? What a nice colour! Keep it up, enjoy life.
Sometimes I don’t know what to answer.
Cowardly, I recoil.
(…)
Four years have passed since that day when Dr. Ricard Rojas told Unzué:
–Our diagnosis is that you have ALS.
Since then, Dr. Rojas has accompanied Unzué. He does it, and the entire team of the Sant Pau Multidisciplinary Committee for Neuromotor Diseases does it. Here there are nutritionists, psychologists, physiotherapists…
In the talk at the Hospital de Sant Pau, Dr. Rojas admitted to having had a bad time that day, the day he told Unzué that he had ALS:
–It is one of the most difficult moments for a doctor –he said–: you cannot make a mistake in the diagnosis and you must gauge the repercussions of the news. You can break the confidence of the patient or the patient may deny the diagnosis. This news will mark the rest of his life.
Unzué and his wife, María, took five months to communicate the news to their three children.
Jesus, their son, asked to speak. He said:
–I will never forget that December 15, 2019. We were at home watching football. Our father has always had a tendency to lower the volume or turn off the television when he has something important to say. That day was hard and concise in his message. He told us that he had a life expectancy of between three and five years, and we all began to cry. It was a terrible time, but it was also special because we felt extraordinarily close as a family.
As Jesus spoke, his father gazed at him in admiration. It was worth stopping at the face of Juan Carlos Unzué, a man proud of his legacy, a man who, from his wheelchair, fights to visualize the community of ALS patients (450 people in Catalonia, more than 40,000 in Spain ) and says:
I don’t change anything in my life. With the life I’ve had, am I going to get mad about this?
