Live Faith with Amyotrophic Lateral Sclerosis (ALS)

Interview with Maria Vivo, Sister of Fran, ALS Patient and in charge of @vivoconela

Live Faith with Amyotrophic Lateral Sclerosis (ALS)
Reading Time: 7 minutes

Fran Vivo is a young Valencian (Spain) suffering from very advanced Amyotrophic Lateral Sclerosis (ALS). Despite being burdened with such a cruel illness, he has been proportionately supported by his community, a lovely family of nine siblings, as well as unconditional friends.

As his young sister Maria — in charge of communication for @vivoconela (an initiative for the diffusion of this reality –, tells Exaudi that, about four years ago, Fran, who is a forest fire-fighter, began to have the first symptoms: “It started with a sensation of weakness in the left leg. It was hard for him to tiptoe; it increased and spread rapidly throughout his body.”

The doctors thought it was something muscular. Fran went to see many specialists in the hope of an answer. But ALS is diagnosed by <a process of> elimination, as the symptoms don’t follow the same pattern in all those affected. So, after many months of uncertainty and tests, the possibility surfaced that it could be a neurological illness, which helped to reveal this reality. After an electromyography and lumbar puncture, the diagnosis was clear, Fran was suffering from ALS, she continued.

What was the key to forward? Maria is very clear: “Faith is a support that teaches us to live gratefully, to dedicate ourselves to our brother in this situation, and to be hopeful.”

* * *

Exaudi: Tell me about the @vivoconela initiative.

 Maria Vivo: The real motive was to give visibility to the illness simply by sharing information on it, because even some of us didn’t know it before the diagnosis, or perhaps we’d heard about it. So we always had an urge to do something to make it more known.

Later on, we realized that, through Fran’s life and story, we could reach more people in a more human way and, through this, put in their hands initiatives and projects that would help to collect funds for research, as well as to explain what suffering with ALS entails.

 Exaudi: How did the campaign begin?

Maria: It was very moving. Personally, I felt that in so far as possible, I was contributing my grain of sand to this fight, because the most important thing is to know the illness and then sensitize society and support the cause.

In fact, we began without expectations. But we were delighted with what we were doing, and what we were achieving little by little.

In the beginning, everything was easier, because there was much to say about ALS so that everything was being revealed. Fran had very good ideas in regard to publications, so I dedicated myself to reflect them and trying to carry them out, be it with a video that talked about a symptom or even something funny, as was the case of the video we did simulating Formula 1, in which Fran put on his forest firefighter’s jumpsuit and motorcycle helmet and had our nephews be the Pit Lane — ideas, literally, of a total fire-fighter.

Exaudi: Were you surprised by the repercussion @vivoconela has had on social networks?

 Maria: Very much so. We don’t take credit for it. What we have achieved so far has greatly exceeded our expectations because, as I said earlier, we had none. We already have more than 21,000 followers, it’s really unthinkable!

We receive grateful messages daily for what we do, or because Fran gives <others> strength to go forward; messages in which they tell us about situations of family members with ALS, or give us some advice on daily issues of the illness.

It all enriches us; we feel we are helping many people, but especially Fran.

Exaudi: Have you seen a positive evolution in Fran as people around him have involved themselves in the campaign? Is he more joyful, happier . . .

 Maria: Yes, very much so. The support he receives from his friends and the people who love him has been and is essential because many of them can reach where we as a family can’t. Of course, not everything is joy and happiness, because ALS is, psychologically, a very hard illness. It shuts you in your body and that’s why the emotional factor is so important.

Moreover, this initiative has given Fran good friends, ready to cross half of Spain to see him, to get to know him personally, and to thank him for his strength and courage.

I believe that when you feel you are helping many people, even when your condition is so limited, it makes you feel useful in some way and you want to go on.

Exaudi: Getting right into what’s important, what role does faith have in this story? What does Fran say to you, or what do you see he expresses in this regard?

 Maria: Faith is support. It’s not magic and it doesn’t take away the suffering. It teaches us to live with gratitude for the life that has been given to us, to understand that life has meaning despite it being very hard on many occasions.

Thanks to the faith, we understand that by accompanying Fran in his illness, we are giving part of our lives to the service of others. It helps us to be hopeful, knowing that suffering is part of life and that, to share it, changes the attitude of the one who helps and of the one who lets himself be helped.

Faith confirms to us that this life is the first step towards Eternal Life. We feel accompanied by many people through prayer, support and closeness . . . and others that have preceded us in Heaven; Faith confirms to us that suffering and death are not going to separate us from the love of God,

Exaudi: Of your siblings, you are the one that does most with this initiative. How do you combine studies and work with @vivoconela?

 Maria: The truth is that, since we began with the account, I did it all with much enthusiasm. I consider myself a person with digital DNA and I love the world of communication and social networks. I think they are tools that can do much good if used correctly. So it hasn’t been too hard for me to find niches to dedicate myself to create the content.

It’s like a hobby for me, which delights me for two reasons: first, that I’m given visibility through my brother’s story, something that I really want to make known in the society, so that people will be sensitized to the illness, and that more aid and research can take place.

And, secondly, as I said before, I enjoy creating content and managing communication, the publications, and the account in general. Moreover, Fran makes it all easy.

Exaudi: How is a family day with ALS?

 Maria: A day with an ASL patient depends on many things. First of all, the phase of the illness in which he is. Evidently, as time goes by, if the illness advances rapidly, the days are increasingly complicated.

In the beginning, they are quite sad, given that the reality you face is a family member, and, above all, there is much uncertainty. In Fran’s case, the illness has advanced very rapidly.

I remember that during the first lockdown in 2020, Fran was no longer driving and was using a wheelchair, but the rest of his body was still active. He could talk and eat. It was a quarantine that was a lot of fun. However, from one day to the next we realized that he could no longer finish whole sentences without stopping to breathe. All those everyday things were the hardest for me.

Later on, his ability to speak and to swallow was practically inactive, and a person in those conditions, feeding himself through the mouth, suffers much choking.

That was the hardest time, because we lived with the tension that he could choke in every meal, and he often did. He tried to manage himself and he did recover.

It was a time of much fear and great tension, but we were conscious of how the Faith supported us and gave us the strength to fight for Fran’s life. So much so that one day Fran really choked, and had a cardio-respiratory arrest. My siblings and I, who were in front of him, dedicated ourselves to praying the Rosary in a loud voice until the doctors arrived. Suddenly, he began to breathe again. They had to do a tracheotomy, which he himself had expressly certified they should do if the necessary moment arrived.

With the tracheotomy, the everyday was less stressful, because Fran now has respiratory stability and he can rest. Thank God, we are a numerous family and we can take turns to do everything. Everything is easier in the summer because we don’t have the routine of class.

In the morning, my father usually takes care of Fran’s personal cleanliness. Sometimes at midday, Fran wants to sit in his wheelchair, and we all help to sit him down, to adjust his position, and the rest.

As regards food, we have all learned to use the Peg, which is the gastric tube through which Fran eats, as well as to manage the trachea to clean it if it is clogged with secretions, and aspirate . . . all of us do a bit of that, according to who is with him at the moment he needs it.

After eating, Fran usually wants to lie down again; well, every afternoon is different. Often Fran’s friends come to see him and also people he has met on the networks that, as I said before, come in person to be with him.

The night routine is to stretch him to mobilize his whole body, give him his medication, and all that is necessary. We each take two-hour turns to be with Fran while he sleeps. And on the weekend, my older sisters come with their husbands and children to take turns so that we can also rest. Some days he must go to the hospital for tests; on others, we go out and see the sunset, some afternoons we watch films or listen to a music concert. Needless to say, there are bad and boring days.

Exaudi: Do you really think that there are still people who don’t know what this illness implies?

 Maria: Yes, many, I’m sure. They’ve heard about it but they don’t know what it entails, and for me, that means not to know it. To know it means to know what exactly will happen to a person after the diagnosis. Many continue without knowing it.

Exaudi: Last Sunday, June 27, you organized together with the Town Council of Benaguasil, Valencia, Spain, a race against ALS. What did you experience?

 Maria: It was such an intense experience that we had an emotional hangover for days. It was amazing; we failed to give <it sufficient> credit. We discovered the goodness of people, how involved they all are, and their support and affection. We felt it all very close.

Exaudi: Were you impressed by the number of people that came?

 Maria: Ye, very much so; there were over 500 registered. Needless to say, we didn’t expect so many people. Thanks to them we were able to collect 4,505 euros for the ADELA CV Association, which works to accompany and support both the affected as well as their family members.

Exaudi: What is your next step when it comes to initiatives?

 Maria: The truth is we still don’t have in mind the next one, but we are very happy because the Town Hall of Benaguasil suggested to us that the race be established officially, to be held every year so, for us, it’s already a lot.

For the time being, we will continue talking about Fran, his experiences, and our day-to-day.

Exaudi: Do you have a message for direct family members of ALS patients?

 Maria: In truth, it is complicated because each family is a world unto itself and what is good for us might not be so for others, in regard to organization and the day by day, but I think that, in a more objective way, I can encourage them to continue fighting, to lean on God and the people they love. And, also, that we will continue to join forces so that this illness will soon have a cure.

Instagram account: @vivoconela

Translation by Virginia M. Forrester

Marido. Padre de tres hijas. Grado de Periodismo y Máster de Comunicación y Branding Digital por la Universidad CEU Cardenal Herrera. Decidido por servir a la Iglesia, Gabriel hizo el Máster de Matrimonio y Familia en la Universidad Católica de Valencia. Ha trabajado en todo tipo de empresas y entidades públicas gestionando sus departamentos de comunicación, así como en proyectos freelance. Apasionado de la gran pantalla y las series de televisión, es crítico de cine. Actualmente ejerce como periodista de Exaudi.
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