"I am no longer self-sufficient"

Francisco Luzón during the presentation of the Foundation which bears his name.
Francisco Luzón during the presentation of the Foundation which bears his name. / Óscar Chamorro
  • Francisco Luzón, Economist and ALS sufferer

  • Economist Francisco Luzón was one of the most powerful men in Spanish banking. Now, seriously affected by ALS, he has become one of the most tenacious fighters against an illness which needs to be made more visible

He was born in El Cañavate, a village in Cuenca, in 1948 and became one of the most powerful men in Spanish banking: he held various posts including president of Banco Exterior de España, and he was a director of Banco Santander until he retired in 2012. With an extremely comfortable pension, Francisco Luzón could have enjoyed a happy retirement with his family, but destiny threw him a cruel blow and in 2015 he was diagnosed with amyotrophic lateral sclerosis (ALS). This is a terrible degenerative neuro-muscular illness of unknown origin; it leads to a selective degeneration of the motoneurons, which are responsible for innervating the muscles involved in voluntary movement.

Although the ALS is determined to stop him, literally, (in fact this interview was only possible thanks to a voice projected from his telephone which transcribes what he writes down), Luzon, who was recently awarded the Alfonso X The Wise Grand Cross of the Civil Order for his contribution to culture, education and teaching, is still an active man. He decided to stand up to the illness and make it more visible, and he has used his resources, his name and his professional skills to form a foundation which helps those suffering from the illness and funds research into it.

ALS is more common in men than women. In Spain, about 4,000 people are believed to be affected by it, and its low prevalence makes it almost invisible in society. However, its effects are devastating. Life expectancy after diagnosis is only five years for 80 per cent of patients, although the way the illness evolves and affects lives can vary greatly between individuals.

When did you start to notice the symptoms of what you were later told was ALS?

I noticed the first symptoms in October 2013, when I was walking from my home to the Bernabéu stadium. That was when I realised that I found it difficult to talk when I walked at a certain speed. Then, the same thing started happening when I was talking on the phone, sitting or lying down. In December that year, at a dinner party at my house, a friend who is a neurologist said to me: “Paco, something’s not right. It’s hard to understand what you’re saying. Why don’t we do a resonance scan?” And that’s how it began.

After those symptoms, how long did it take for them to diagnose this illness?

As you know, this illness doesn’t have a specific marker like TB or diabetes. How is it diagnosed? Well, they check for lots of different possible infections or illnesses. And when they have ruled out cancer or other conditions and they see how you are deteriorating physically, that’s when they end up saying: “You have ALS.”

It must be dreadfully hard to receive news like that. How did you take it?

The diagnosis was progressive. They finally told me in January 2015, one year and three months after the first symptoms appeared. My family and I began to learn about amyotrophic lateral sclerosis gradually through that year. It was devastating. For the first two years I found it terribly hard to deal with emotionally. Now the problems are physical because, as you can see, I can’t talk, or eat, or walk very well. But I have to tell you that I live with great hope. I can assure you that fighting for people who have ALS, and supporting research so that in the future nobody will suffer from it, keeps me alive.

How did your family take the news?

My wife always came with me; she was always at my side when they did tests and gave us the results. We were as one. We told our children and other family members bit by bit, gently and carefully. Obviously, in January 2015 the whole family knew, and it was hard for the whole family to take it in.

Then came the moment when you decided to fight the illness and create your foundation.

Yes, the biggest question for me during 2015 was “What am I going to do with my life now? Just sink into despair?” I have always been an active person, someone who likes transforming things. The doctors told me to relax and just enjoy my time but that didn’t make any sense to me. That would have meant not being myself any more. That’s why, as the illness began to affect me more and I saw how much the way the treatment could be improved, and I realised there is such a lack of knowledge about it in society and the medical profession, I decided to create the Luzón Foundation later that year.

How has the illness advanced since January 2015? What has happened to you?

My ALS is bulbar, which means the neurones which send the messages from the medulla oblongata to the muscles of the throat and mouth were the first ones to start to die. That’s why my first symptoms affected my speech and, at the same time but more slowly, my capacity to eat and drink. Later, towards the end of 2015, I lost my speech completely, and it was becoming more and more difficult to swallow. In July 2016 they fitted a gastric tube and they inject food and medicine through that to keep me well nourished. I don’t take anything by mouth any more. And since last summer the degenerative process has begun to extend to my feet, legs, arms and hands. I’m losing muscle strength and losing weight drastically. Now I find it very difficult to walk, shave, or get dressed. In other words, I’m no longer self-sufficient.

Have you needed psychological help?

No. Why would I? It hasn’t been necessary and I’m sure that is because of my mental strength and the strong support of my family and friends. When you are loved, you live through the experience with less fear and desperation.

During these years, you have met other people who also suffer from ALS. What fears do you have in common? I imagine that you talked about such things to help you with the focus for your foundation.

I have met many others, and am still doing so. Many doctors say that most ALS sufferers are good people. Whether that is a result of the illness, I don’t know. What I do know is that meeting someone with ALS is finding a friend for life. We greet each other with a big hug. Since I appeared in the media last November, and since the foundation was set up, I have noticed increasing interest in the illness and the people who suffer from it, as well as in the foundation. That is beginning to open a window for hope.

What have you learned since you have had this illness? I imagine you have had a lot of time to think.

I have learned many things, but two especially: one, that life is the most important thing we have and it is a mistake not to love it. The other is that love and affection give sense to life. Life isn’t something you can buy in a supermarket or boutique. Life is yours. Don’t make the mistake of selling it.

A lesson of life...

Death doesn’t exist for human beings. What exists is life. That’s why I believe that if we only realised that, the world would be very different.

Are you afraid? Do you think much about the future, about what tomorrow might bring?

I try to do that as little as possible. How? By being busy for as much time as I can, dedicating myself to improving treatment and research. The foundation and my family are what enable me to keep a smile on my face, because what is important to me is today and doing today what I might not be able to do tomorrow.