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Javier Mancebo
Updated
Juan Carlos Unzué days ago confirmed that when it touches, he had decided not to do tracheostomy to increase his hope of life time. The exporter and former coach was diagnosed with ELA in February 2020 and tonight has participated in the Cope’s great game with Juanma Castaño.
His great attitude and how who surrounded him have perceived him: “I am going to tell you for the first time something that I have felt, for a long time, and that is that my presence, and especially with people who do not know anything, the first thing I generate is a smile. And feel that, perceive that, is pure energy to move forward”
Friends, family and pain: “No, I believe that this smile, wearing how I carry the disease, generates joy within what this situation is. And perceive this, for me, it is a motivation, it is not an obligation. Knowing that the people I want most will be better if I have a good attitude, because it is something that every morning when I get up to have and maintain.”
Unconditional love to his wife: “What I have felt is unconditional love for my wife. As you can imagine, Maria, from day one, is by my side doing everything I need and helping me in everything, with all her love and respect. Then, perceive that in such a complicated situation that that person, who has accompanied me so many years, is so close to you is Blessed glory.”
The tracheotomy and its decision not to make it: “I 3 years ago signed the last wills and signed that I would do it, but over time I have come to the conclusion, and it is very meditated, that I am not going to do it because I have been able to perceive in other colleagues what is the quality of life. Possibly if I had to do it 3 or 4 years ago, I would have made it safe. But, with the time I have lived, I have lived. It is not enough quality of life for me to live with that respirator.
The approval of the ELA law: “The most complicated have achieved it after many years of work, of many affected people, that some of them are no longer with us, family, associations … I think that law approval has been achieved. But now it is the most important thing, which is that the aids of all those affected arrive at the house. Slowly, which consists in being able to attend and care for people who need assisted ventilation 24 hours, so that they can decide freely whether to do the tracheotomy or not make it.
His great victory: “This is a team’s victory. I have always worked as a team and it has not cost to continue doing it in the ELA team. It is something that makes me feel satisfaction and has given me the opportunity to continue feeling useful.”
Cry: “From the day we let our children know I have not cried. I do not think that is good, I think that crying relieves on many occasions, but because of my way of being it costs me. And sometimes envy to the people who are able to take out and relieve that way.”
How do you express the feelings around you: “I don’t remember it. When I told my children we all cry, the five. We cry a lot, but with a sense of pride to see that your family and your children are more united than ever. And I can corroborate that and I feel very proud.”
Do not miss anything: “I think there is a reason. I think I have taken advantage of the 57 years that I have. When I have wanted or wanted to do something I have thrown myself into the pool. Now, with the bicycle, when I wanted to leave I have not stayed at home. So, to have the feeling that I have lived with that intensity, and with that fullness, it makes it now much quieter and I do not miss anything.”
How do you want everything to be when you are not: “I think the only thing I do not deserve, that day that is no longer, is that they feel sorry or sadness because I am not. I do not deserve it. I would like that duel, that I understand that it is very particular and very personal, be as quickly as possible, as short as possible and that they take advantage of every day of their life as I have taken advantage of it.”
The hardness of this disease: “That’s why when I listened to people to say: ‘You’re going to fight the ELA …’ I
The cruelest disease that exists: “That is very personal and I can talk about mine. Obviously, it is cruel. It is difficult to see how your body deteriorates, but that is what gives meaning to life because if I in addition to that deterioration I did not know who I am talking to or at what time I am, so it would make no sense. Having all my cognitive ability makes me enjoy other things in another way. And it can be done, it can be done.
