On Monday I sat again in a conference room to listen to Juan Carlos Unzué (56). It happened at the wonderful hospital of Sant Pau.
In the last few years I have spoken there a few times. In 2020, a few weeks before we were confined, he welcomed me to his home, in Sant Just Desvern. The other day we talked about the biography that colleagues Ramon Besa, Lu Martín and Marcos López had co-written: Juan Carlos Unzué, a full life (GeoPlaneta). From time to time we share a watsap.
Whenever we see each other, Unzué spends the time smiling and asking me about my things.
From his wheelchair, he tells me:
– Are you still running? What a beautiful color! Keep it up, enjoy life.
Sometimes I don’t know what to answer.
Cowardly, step back.
(…)
Four years have passed since the day when Dr. Santiago Rojas said to Unzué:
– Our diagnosis is that you have ALS.
Since then, Dr. Rojas has accompanied Unzué. He accompanies him, and the whole team of the Multidisciplinary Committee for Neuromotor Diseases of Sant Pau accompanies him. There are nutritionists, psychologists, physiotherapists…
In the talk at Sant Pau hospital, Dr. Rojas admitted that he had a trance that day, the day he told Unzué he had ALS:
– It’s one of the most difficult moments for a doctor – he explained -: you can’t make a mistake in the diagnosis and you have to gauge the repercussions of the news. You may undermine the patient’s confidence or the patient may deny the diagnosis. This news will mark the rest of his life.
It took Unzué and his wife, María, five months to break the news to their three children.
Jesus, son of both, asked to speak. He said:
– I will never forget that December 15, 2019. We were watching football at home. Our father has always had a tendency to turn down the volume or turn off the TV when he has to tell us something important. That day he was sharp and concise in his message. He told us that he had a life expectancy of between three and five years, and we all started to cry. It was a terrible time, but it was also special, because we felt extraordinarily united as a family.
While Jesus spoke, his father watched him in admiration. It was worth stopping to see the face of Juan Carlos Unzué, a man proud of his legacy, a man who, from a wheelchair, struggles to visualize the community of ALS sufferers (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, will I work for it?
