April 18, 2024

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One summer day in 2017, in Bristol (England), where he worked as a veterinarian, Antonio Moreno (Granada, 42 years old) wanted to run for a bus that was starting, and was unable to. He stood rooted to the street, stupefied. His brain had given an order, and the order had been disobeyed. He tried again, to no avail: he couldn’t move his legs. Only he, Toni Delong, as he is known, knows what was going through his head at that moment. But months later he found out and the others found out what had begun then, in those seconds that seemed to last forever: that brief clawing was the first sign of a degenerative disease that had begun to become visible and to which a name was given, after various and repeated symptoms, on December 26, 2018: multiple sclerosis (MS). “The disease with a thousand faces, because it affects each one differently,” says Cristina (Valladolid, 47 years old), his girlfriend for a decade. At that time, her love story had an exceptionally bitter guest who has been kept short, as far as possible, so that he does not affect her life.

The relationship began like so many, from a universal phrase that, on this occasion, the bride-to-be addresses to the mutual friend who introduces them: “Your friend is an asshole.” It was the second time that this friend, Víctor, had introduced them, both in a disastrous way. The first was in Valladolid, the city where Cristina is from and where Toni worked. So it was she who, she admits, “passed over” Toni and continued to party around. Months later, in Madrid, it was Toni who passed on Cristina. “I couldn’t be with her,” he justifies himself: “It was one of those nights when you’re not there to talk.” The third time, Víctor told them directly: “I’ll leave you here alone and whatever God wants.” What God wanted was for them to start to like each other, and to meet at the Rufus Wainwright concert in Valladolid (both of them, at that time, were concert photographers). Until in March 2012 in Madrid, after seeing each other three or four times throughout the city, they kissed for the first time. There they date the beginning of the relationship.

“Everything that could go wrong, did go wrong, and yet, when everyone believed that we would not survive, what went wrong made the relationship stronger,” says Toni. For example, that he got a job as a veterinarian in Bristol in 2016 and had to go live there while Cristina, a cartographer in a service company, stayed in Madrid. Before, he had worked three years as a telemarketer in the capital of Spain (“I found a job with better conditions as a telemarketer than as a veterinarian”). They saw each other once a month. They trusted each other (“Does it pay off? Pays off. If love is strong, pays off”). They were talking on Skype. And they admit: it was very hard. No matter how much you talk every day, no matter how much you could see each other once a month. It wasn’t enough, but they held on.

After the episode of the summer of 2017, Toni began to have, little by little, more notices of the body. She began to limp (now her limp is very noticeable, and she helps herself with a cane). The doctors saw it, at first, as a problem of the locomotor system. “And I said that there was no locomotive, because nothing hurt me. That it was a nervous problem in any case, because I didn’t have any pain that prevented me from making a movement; I couldn’t do it because the order didn’t arrive,” he says. She was undiagnosed until December 2018. On December 26, Cristina spent Christmas with her family in Valladolid; she called her Toni to tell her that her visit to the doctor had ended in a hospital admission. “I remember the message: ‘Honey, I’m getting admitted,’” she says. “I ran on the first train and came with him.” She spent two days in the hospital undergoing tests.

“He had,” Toni says, “more symptoms that he didn’t associate with the disease. For example, tiredness. It was brutally tired. I attributed it to work. And to get out of bed I needed to set the alarm clock an hour before to go to work, because it was so hard for me just to get up. There were days in Bristol when she couldn’t meet anyone after work. And some days off when he couldn’t get out of bed, he would lie there resting.

“In fact,” Cristina intervenes, “sometimes you fell asleep in such a way that there was no way to wake you up. One day you scared me. It was such a deep sleep that you didn’t wake up at all. And I was freaking out. It was in October, two months before the diagnosis.

“I suspected there was a neurological problem,” Toni says. But at no time do you think it can be something like that. multiple sclerosis. They gave me the news and I was crying for an hour. One hour. And then, with jokes and humor, because this resource does not fail. You’re screwed and what do you do, screw yourself more? Forward and that’s it. But anyway: the bad thing is not the first hour. The bad thing is the years that it costs you to accept it; the bad thing is when you already need help, when you stop fending for yourself.

Toni and Cristina, in the Plaza de España in Madrid, the city where they live.
Toni and Cristina, in the Plaza de España in Madrid, the city where they live.Claudio Alvarez

Now there are 50% of things that Toni Delong can do by himself. He can, for example, travel alone (he has been in Bristol for 10 days with a friend), although he needs someone to drop him off and pick him up, as well as the airline’s assistance for people with disabilities. “I can have a lot of willpower, but there are days when I have shitty willpower, and physical strength, and I think: I understand that it’s not that easy, and I don’t know how it is for her. That I understand that the easiest thing in a situation like this is to send everything to hell. But although they were not problems of this magnitude, we overcome all the problems in the same way, no one throws in the towel”, says Toni. Cristina: “When you have been there for many years, this only means putting another point of view on the life that awaits you. Nothing else crosses your mind; a new circumstance, a new solution.”

“The advantage of our relationship is that if she has to tell me I’m being an asshole, she tells me,” Toni says.

“And I tell you.” There are days when he is unbearable, and there are days when there are certain things that I don’t like and I tell him. He needs help and I need him to make things easy for me.

That is a key aspect: the more active Toni is, the more he moves and the more things he undertakes to the extent that he can, the more he can delay the effect of the disease. Primary progressive multiple sclerosis (PPMS) affects only 10-15% of patients with this degenerative disease. It has no flare-ups, but it does start more or less slowly and steadily worsens. There is a time when the disease can stabilize, but in general it progresses slowly and inexorably. In addition to leg mobility problems, Toni has problems with chronic fatigue, speech or sphincter control. For these patients, it is estimated that life expectancy is 71.4 years. “What I want to tell people who have this disease is that if you like concerts, go to concerts; If you like to run, run. If you can, sure. You can do things in a thousand ways. If you like to travel, travel. If you’re doing what you love, even if it’s not the way you could before, it’s good for you and you’re happier. This disease is a bitch, but what are you going to do? For example, I’m not going to work anymore in my fucking life. Well, okay: I can do other things. I can study, for example. I can learn to do many other things. I can be active, alive”, says Toni.

It is Saturday July 30 in Madrid, where they both live. They drink a few beers of beer. In a couple of weeks they hope to go to the Sonorama festival. Sometimes there are plans that Toni falls out of, also others that Cris falls out of. This time none will fall. “Honestly,” Toni finishes, “at one time in my life I thought I wouldn’t have relationships that would last. But come on, not even two weeks. And look”. Cristina ends: “A few months ago we celebrated 10 years together. Against all odds. The disease, I really say it, is the least important thing that has happened to us ”.

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