I'm a journalist, I have ALS and I can't move anything in my body except my eyes ... so I write articles with my pupils
ALS (Amyotrophic Lateral Sclerosis) is a macabre lottery. A degenerative neuromuscular disease that appears spontaneously, with no known origin and unrelated to any particular habit beyond its hereditary side. There is no cure or treatment, only palliative care. That lottery was played in 2014 by Carlos Matallanas, a journalist who had a parallel career in semi-professional soccer. He was 33 years old then, and although the diagnosis was given to him at that time, months ago he noticed how his ability to articulate words was decreasing as he stopped controlling his arms with the usual precision. He got used to the idea of what was happening to his body.
Among other decisions, he published the progress of his illness in The confidential, the medium for which he worked then and in which he coordinated the Sports section. Five years later, Carlos is still alive, despite the fact that the vast majority of ALS patients do not exceed the third year after diagnosis. Of course, bedridden and connected to an artificial respirator. But he continues working, as a journalist for Ace and as an analyst for Fuenlabrada, a club that has just risen to the 2nd division. Just after reaching the milestone, we visited him at his house in El Puerto de Santa María, in Cádiz, where he lived when he was diagnosed with the disease. There he decided to stay.
In addition to his respirator, Carlos is connected, metaphorically, to a computer. Not just anybody: one with a square screen instead of a panoramic one, with infrared sensors and an interface specially designed for those who, like him, can only communicate through the movement of their eyes. Thanks to him he writes his articles and, well, he communicates. Not only with the people of Ace or Fuenlabrada, but with anyone. You have no other way to tell your partner, your family, or your caregivers if something is bothering you, or if you have any kind of need. With WhatsApp Web you also write with those who are not physically at your side.
He greets us with a smile (in addition to the eyes, he can also move his lips slightly) and the voice of his computer utters an "enchanted" to return the greeting. From there we realize that the conversations with Carlos are not synchronous, as we are used to. Each question or comment we ask takes three, four, five minutes to be answered. Only the sound of your respirator is heard during the pauses imposed by your response, looking letter by letter on the virtual keyboard of your monitor until you finish spinning the sentence. Then, a fairly natural voice pronounces the phrase fluently.
Carlos Matallanas writing with his pupils.
Because that is their only way to communicate: looking at letters and characters on the computer, made by the Swedish Tobii. The camera, combined with the infrared sensors, detect to what exact point of the screen you are fixing your gaze, and interprets it as the will to select a character. Each person, based on their capacity and skill, configures the time that the system will interpret as voluntary gaze. In the case of Carlos, it is 400 ms, well below the average number of users of this system. "The Tobii people themselves already told me that I am the one who writes the fastest of all the cases they know," says Carlos. In addition to expertise, his journalistic and writing habits help.
The communicator has a 4: 3 screen, much more appropriate than panoramic for patients like Carlos: the exhaustion of the constant visual path is much less
We are surprised that the monitor is 4: 3 at a time when this aspect ratio seems almost obsolete. The answer is accessibility. "A while ago I used one with a wide screen, but it was dizzying. The letters were much more distant from each other. Being almost square, everything is at the same distance from the eye," says Carlos. The visual journey is less, and forming part of a writing system with which you can spend several hours a day, exhaustion ends up coming.
Your communicator, inside, is a PC like almost any other. 256GB SSD, 1024 x 768 pixel screen (no frills here), with 4GB of DDR3 RAM and a quad-core Intel Celeron J1900. And that yes: almost four kilos of weight.
As with consumer technology, these devices are also becoming obsolete. The first device he used was another Tobii, but older. He inherited it from Pablo Olivares, a television screenwriter who at the time was working on The Ministry of Time. He died of ELA in 2014 and has already written that his communicator should go to Carlos. "I received it two years before I had to start using it. When that time came, I found that it had become obsolete, so we bought the one I am using now, which was the latest model." They did not even know each other personally, the surprise was total.
"Every time the communicator suffers a hang, we all start to tremble"
Technological differences exist. Carlos tells us that comparing that device he inherited from Pablo with the one he uses now would be like comparing a 2009 iPhone with the last one announced, a 3GS versus an Xs. Fluidity, capacity ... and even comprehension capacity. Carlos reproduces a phrase with the voice of his current communicator and with the one the system had a few years ago ... The current one sounds quite natural, slightly robotic, of course, but more than understandable. The previous one sounds metallic, very forced, with some words even difficult to understand at first.
Social Security does not cover or subsidize any communicator so that ALS patients can communicate
Perhaps consumers are used to the fact that technological deficiencies or imperfections translate into that the Instagram photo will not be perfect or that we have to wait a few more seconds to play a video game. For Carlos, the fact that a word is not understood can become a very serious problem in extreme circumstances.
Something similar to what could happen if the communicator suddenly stopped working. "Every time he has a hang up, at home we all start to shake. It would affect everything, I have no other way to communicate or work." Here Carlos makes a point: this communicator costs just over 10,000 euros. In its most basic versions, somewhat less.
Having a communicator like Carlos's in Spain, even in its most basic versions, is only possible if you have the resources to do so.
"It should be like a medicine, something provided by Social Security, it is a total necessity for a patient like me. But if you are not fair with drugs, with technology it is even more complicated. It would give me a lot of security to have one basic aside, reserve, in case this fails ". In countries like Germany they are within the public health system. Carlos's paid with one of his brothers' savings.
In fact, it failed him. Several times. “I experience constant failure, up to twice it has been changed during the warranty period. It is the third one I have and I remain the same. At this point, tired of wasting time and energy, I focus on continuing to live, I assume that my computer also has a disability. ”
Carlos, because of his job and his environment, has been able to continue despite his illness. A family without resources, living daily, could not cope with practically any of these expenses. Because ALS is the most expensive neurodegenerative disease: annual expenses amount to 34,000 euros between material, equipment and wages. His journey through the desert with the help for the agency gives for another report of 20,000 words.
The predictive Tobii text built into Windows that Carlos prefers.
Your communications with the Tobii also feature predictive text that suggests complete words or phrases that you have previously used. It is comfortable, although not always accurate. "The caregivers laugh with some words that I say without meaning to. I take it as a joke too, but if I wanted to say something very important and I couldn't ..."
The communication system receives an update per quarter, more or less, which comes free via OTA. But as with any device, not all are updated eternally: there comes a time when the hardware is insufficient and it is time to buy a new equipment if you want to have the next news and improvements. The reason why Carlos renewed the one he inherited from Pablo Olivares. "That one did not allow to go from version 3, this one already uses version 5", referring to the Communicator software.
Timeline of Carlos's Twitter. On the right, the vertical bar of commands that replace the keyboard and mouse.
Your articles in Ace They no longer focus on chronicles of recently finished matches or anything that requires immediacy. It is no longer viable. Instead, it publishes slower columns, on more sustained topics over time. As with his analyst work for Fuenlabrada. Watch videos of games to analyze the club's next rivals and draw conclusions that he conveys to his teammates through the WhatsApp Web, one of his greatest allies.
Articles are sent through Word documents and published by a newspaper editor in the content management system. "I could do it, but it would take me a lot longer than it takes someone who can use a mouse and keyboard with their hands," says Carlos.
"Everything will be fine"
Carlos, with his dog, on a beach in Cádiz before contracting ELA.
Carlos's is a story of courage, the one that is necessary so that when you are diagnosed with ALS, your response is to appear at events with a sign that says that "everything will be all right". He takes these last years even with gratitude: in previous interviews he has claimed to feel lucky.A while ago I thought that I would not make it to 2019. And she has, even working as a journalist and as an analyst for her love club, living until her promotion to 2nd.
That same motto is present in a poster that is on the shelf at the foot of his bed, right next to a collection of soccer jerseys, some of which he himself wore, such as the one from Racing Portuense with which he marked the last the club's goal in 2013 before disappearing, or Rayo Majadahonda's, where he also played. Also those that have been sent by players like Sergio Ramos or his friend Fernando Torres, with whom he recorded an interview in 2015 that is a pure life lesson. Or the one that the refounded Racing Portuense gave him with his name and bib on his back.
Carlos says he doesn't like giving advice to those who diagnose ALS. “It is a painful process where any reaction or mood is acceptable. I have the good luck to have some concerns intact and that technology helps me to work and feel useful. But we cannot force everyone in this situation to find the motivations that I have. I do think it is important that those who want to keep going know that luckily we have technological advances that a few years ago seemed like science fiction ”.Carlos is a patron of Fundela, the Spanish Foundation for the Promotion of Amyotrophic Lateral Sclerosis Research, which dedicates most of its donations to the Mine Project, a worldwide initiative of genetic analysis that helps to open lines of research for cures or treatments of ELA. If you want to collaborate, you can use their donation form.