It wasn’t easy to hear the neurologist tell me that I had an incurable degenerative disease, ALS, and that I had three to five years to live, but it wasn’t an impact.
Did you expect it?
I knew something serious was going on in my body, so I even felt a little relieved that I finally had a name. A very complicated situation, but a magical concept immediately appeared.
What concept?
The fact of accepting something that I could not control or change. This acceptance that came naturally to me has helped me a lot.
You are not a religious person.
I was losing faith and today I don’t feel that there is anything else. For me, this helps me make the most of the here and now, today.
And doesn’t it have downfalls?
That day has not yet arrived. It is possible, knowing that this disease is crippling you, that it will come, but when it comes I will manage it. I don’t worry about the future.
It is very cruel.
I don’t like it, but it has its positive side. ALS allows me to be Juan Carlos, with cognitive abilities intact until the last day, so even if I remain motionless in a bed I can continue to enjoy life.
Telling her children must not have been easy.
No, but it was the most emotional day of my life: all five of us hugging and crying. I felt proud, Maria and I have managed to convey to our children the value of the family.
What is love for you?
I argued that falling in love lasts a while and that companionship and commitment remain. Without ALS I might not have felt what I feel now for Maria.
What?
It’s not just an “I love you” anymore, it’s loving deeply. I don’t know if you can even imagine what I feel when I see my wife waiting for me all day to help me, take care of me, bathe me, with all her affection and respect. It’s pure love.
What else did you understand?
The ability to differentiate the essential, which, like most people, was not able to before. And the essential thing is to think, feel, get excited, communicate. I will lose the latter, but there is technology that helps us and, therefore, I will be able to enjoy all of this until the last day, and it is a lot; and above all to be useful, which gives me enormous satisfaction.
Try to give visibility to the disease.
And get resources for research and for associations, and everything I do I receive multiplied in the form of affection and respect. When I was given the wheelchair I was excited because I saw that I could do things that were no longer within my reach.
Visit those who can no longer go out.
Yes, and we manage to get them out. Accepting allows you to think about what you can do despite the limitation and not waste time. The ELA collective gets together often to organize things and that makes you feel useful.
You never lose your smile.
I would never have thought that I could have so many moments of happiness in a wheelchair.
He has even organized wheelchair races.
It’s good to laugh at ourselves, which is essential. People need to socialize, go out, and try not to leave anyone sick at home.
…
You have to believe in yourself. It is much easier to live with the feeling that you have been brave and daring. I look back and see that my life has been full.
What an illusion, the party.
Manchester and Barça, that day was the closest to absolute happiness. Seeing how much the ELA team enjoyed it with the faces they made made me feel happy, and how those 91,000 people in the audience had responded.
And four and a half million euros collected.
For research, a budget that should be guaranteed by the State because it is a disease that affects 4,000 Spaniards and that can appear to anyone.
Three deaths a day from ALS in Spain.
And three new signings a day that affect families in a radical way: we are talking about 20,000 or 25,000 people who have not stopped fighting for a dignified life.
And what do the politicians say?
They have been the most disappointing moments of my life. They have been shown the affected people, they have checked what their needs are, but the aid does not arrive. They have no forgiveness.
He will continue to fight.
I have had the fortune of sharing a dressing room, as a player and as a coach, with the best players in the world, but the team with the most cracks is the ELA team, they inspire me. Companions with a much more advanced stage of the disease, what they convey to me is that they want to continue enjoying life.
