Nuria is 51 years old, was diagnosed with multiple sclerosis in 2017 and, after a flare-up, the disease attacks mobility on the left side, both in the leg and arm. He also suffers from a lot of fatigue, one of the so-called invisible symptoms. Someone might decide that she is a warrior, one of those heroines who fight against the so-called disease with a thousand faces. But why do you always have to be a warrior? Nuria also has moments of weakness and claims them. Strong, weak, sad, happy, tired, exhausted. There is a daily contradiction there, you know; but also a life and a project on the horizon: doing the Camino de Santiago with his friends.
Always being sick. Feeling helpless that people don’t understand you. Don’t count it so it won’t be heavy. “It has a thousand faces because it can manifest in a thousand ways and it can evolve, it can affect movement, sight, speech, memory… It’s not the same thing as the fatigue you can feel during a day at work than the fatigue I feel when I get out of the shower,” he says.
Today is one day every four months that you can access neurorehabilitation services offered by the public health system. We enter a bright building, a space that has recently become a refuge: the Centro de Esclerosis Múltiple de Cataluña (Cemcat), a place located on the Vall d’Hebron hospital campus in Barcelona, where the patient, in the same center, can be diagnosed and treated, undergo neurorehabilitation and also participate in research if they wish. “At first it wasn’t clear, but now it’s proven that I’m going to be with other people who are going through the same thing. Here, we can talk the other way, you don’t have to give explanations to Nadie. Now, it’s my comfort zone,” assures Nuria.
Multiple sclerosis is a disease that affects the central nervous system, there are all voluntary functions, but also involuntary ones, such as sensitivity, motor control and strength or muscle tone. When inflammation occurs, you may experience thousands of symptoms. “Now with the evolution of new drugs, it has slowed down. We see fewer germs. There are more and more drugs, we have spent the last few years having two drugs at 18 and this development brings hope. There are very powerful treatments that change the course of the disease. Here we have patients of all stages of multiple sclerosis, but we are organized in such a way that we are with others with the same ability, in the same range of functionality, who share the same concerns. The same patient has an expert to help him, explains Roger Meza, rehabilitation doctor and head of the neurorehabilitation department of Cemcat, who works hard within the Multiple Sclerosis Department, ICS, through the Vall d’Hebron University Hospital, FEM and the CatSalut foundation.
Today, he practices art therapy. Five students attend the class of Nuria Martínez Sabater, art therapist. We don’t talk about the illness. Bueno, of course, is treated but in a different way. The mechanical part is worked on, so that the patient maintains their skills in rewarding activities, such as writing; and also the emotional part, which allows you to express emotions. “We work on these emotions from a creative process, and this is what we offer through these materials to improve the exercise. Why is it important on an emotional level? That doesn’t mean that the word has to come out. When you have a lot of emotions inside your body, if you don’t take them out, you fight,” explains Nuria Martínez.
The patients who participate in the meeting are very focused on their creations. Amitai, who has been working for 31 years and is a professional photographer, is becoming a star: “It has helped me a lot. I have had an active skin rash for the past few years, my arm and hand burn like I have a second degree burn. I have had very bad depression. This therapy helps me relax my mind.” At birth, Amitai’s family decided she was the star girl at the front; Now is the time to build your new star.
A green cactus, from Montse, centers all the views. “It’s very useful, it’s one of the activities that I love the most,” he says. In the south, they work together on the stars Lourdes and Susana. “Apparently we see you well, but it goes inside. At first you want to have a normal life, but I don’t let you go. It’s important to accept what you want,” says Susana, who does so much on one wheel. “You are my freedom,” he assures.
Río, another patient, invites Lourdes and Susana to tell him the way. In the summer of 2015, 10 multiple sclerosis patients embarked on an adventure: to walk the last 100 kilometers of the Camino de Santiago. One of the volunteers, a television director, reflected on the experience in 17 Minutes, a documentary called Anoche dreamed that he was hitting the road again. “We came back changed,” says Susana. Lourdes is.
In Catalonia, almost 12,000 people live with multiple sclerosis. Three out of four are women. Nuria is one of them. End the trip and write a message to your friend: “When you come to physiotherapy class, today we are having trouble with the giant tablets we use to work on balance! “. As Lourdes and Susana started in 2015, it is now Nuria who follows her own path and, by the way, arrives in Santiago.
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