“What do you remember?” Asks Juan Carlos Unzué, referring to a painting he has just before going out to the small garden. A kind of pieces with shapes and colors are stacked on top of each other. “They’re like Tetris pieces!” He explains with a laugh. Because he is like that. During the more than forty-five minutes of interview he never loses his smile. Not even when he talks about ALS (amyotrophic lateral sclerosis) that was diagnosed just over a year ago. Not even when he explains the pains or physical weakness. Not even when he talks about death. Without complexes and with hope, Unzué explains how he lives day by day with the disease.
How are you?
Mentally better than the day I made my illness public. Especially as a result of the large number of signs of love and respect for people with whom I have a relationship, people with whom I had no contact for many years and people I did not know but who wanted to contribute their grain of sand. It has given me a lot of satisfaction not only to get in touch with some of my new teammates, but also to get to know some of them. I find that I could hardly feel a greater satisfaction than this.
With this disease you have the feeling that, although it is slow in my case, it does not stop. You are noticing a progressive deterioration. It is true that this last month and a half, since I made it public, I have not noticed a substantial change, only what I had anticipated within the uncertainty that this disease is.
What did you notice that made you think something was wrong?
From the first visit with doctors, with neurologists, more than five years ago. When I return to Barça with Luis Enrique. The problem was that I had a lot of cramps especially when I put my body at maximum intensity with the bike. This continued for three years. I date this feeling of tiredness first and then a bit of physical weakness, lack of strength: in January 2018, when I was already a coach in Vigo.
What did you hear?
My head was asking me to rest even though I felt like doing some sport. I was fine with escaping work. But at that moment my head said to me: “Rest, Juan Carlos.” With the bike, unlike what had happened year after year – little by little adding miles and time – this time what appeared was fatigue. That’s when I started to notice that I wasn’t looking good.
Did you have any symptoms that you could detect with the naked eye?
Yes, on a finger of the left hand. He began to lose mobility, not to be coordinated. I detected something no longer just sensational and internal, but external. It was increasing and the following summer, 2019, the same thing that happened to my toe happened to my big toe. It was part of the process he was going through and of which he was unaware.
How did you live the moment of the diagnosis?
My feeling was that something serious was happening to the body. I understood it that way. And perhaps this anticipation in the news made the diagnosis have less impact. This point of uncertainty disappears, of not knowing what you have, and you put a name to it: ELA. The doctors advised me, and I think it was good advice, not to read much on the internet, because every case is a story. I have tried to select the information very well to be aware of what I have.
He was on the bench for Girona. Did you consider leaving it?
The first person who encouraged me not to stop coaching Girona was Dr. Rojas. This gives you a lot of confidence. He told me, “Don’t worry. As a coach you don’t have to kick, you don’t have to do like when you were a goalkeeping coach or even when you were a second coach ”. Being a coach involves more observation. I felt strong enough to continue with the project. When I left Girona is when I asked for a second opinion and decided to dedicate time to my health.
How were the months after you left?
Until January 20 there are many visits to doctors, many tests. These were not easy days. From the beginning of February, especially around the seventh or eighth of February, is when Dr. Povedano gives me the second opinion, the diagnosis is confirmed. From then on, obviously with much more peace of mind, because the disease forces me to do it and demands it of me, I do everything by devoting more time to it, such as things as simple as showering or dressing.
And that’s when he decided to explain it?
I decided to explain what I had face to face to everyone I could, to my family and friends, both in Pamplona and in Barcelona and Girona. The impact would be strong anyway, but I thought if I could perceive it and see how at any other time, it would be a little softer. The problem was that confinement came. Faced with this situation, one of the goals of the press conference, perhaps the least important but also key for me, was that all my friends and acquaintances would find out about watching me on television, and that they would stay longer. quiet.
Why did you decide to make it public?
I said to my wife, “I think I will make it public, Maria. I think this disease has very little visibility. ” I decided that pretty quickly. People do not know this disease: neither what it is, nor what it produces, nor in what situation we patients are. I thought I had to give it visibility, I thought I had to take advantage of my public image.
It didn’t have to be easy.
I thought it would make me feel good myself, and if I feel good I help them feel good. The bottom line of this goal is to get more financial resources as well, because unfortunately today they are few. Research is needed and, although it is possible that current patients will not be able to benefit from it – I do not lose hope – I will have the peace of mind of having put my grain of sand at the service of those who will come. after.
Before he made it public some media advanced.
I was a little surprised. I was aware that for a few months there was a part of the press that knew what was happening to me and had maintained respect. The idea was that I was the one deciding, and that if I decided to make it public, go ahead; and if not, then they said nothing. Not only me, but also my children and my wife, we received messages: “Listen, is what they say true?” These friends, whom I wanted to know about on television, lived a few hours of worry that they shouldn’t have lived through. I’m a little disappointed, but I don’t want to give it too much importance either.
How is your new team?
There is a lot of commitment. Being mentally well, especially from the start, is not the most normal thing. A patient, when he receives the news, what he does is get angry with himself, with the doctors, the family and the world. I, in this disease, feel privileged. I have the same disease as them, but the circumstances and context are very different. It’s one more reason to continue with this goal of giving you visibility and helping in some way.
Living with this disease is very expensive, both emotionally and financially.
Many of my teammates don’t have the best personal circumstances, and that makes it hard for them to be in a good mood. There are people who decide to let go because it is not an economic burden. We cannot allow this in the 21st century. It should be a right, to be ill and to help you be able to stay alive – if that is your decision – for as long as possible, as with any other illness. The right to euthanasia has recently been achieved. Obviously I agree with having a dignified death. What we ALA patients ask for is also a dignified life in these complicated stages of the disease.
Do you feel strong about facing the future?
More than how long I will be able to live and under what conditions, what I am clear about is that I decide how I want to live. That the days he is here must be worth it. Despite these circumstances, and those to come, I think life is worth it. Sometimes what seems simple and that we let go of turns out to be what makes us happiest. I encourage people not to wait to have a diagnosis like mine to live day to day, to dare to do things, that living is worth living.