Sitting on a terrace in the Madrid neighborhood of Malasaña, María Luisa Vives (Barcelona, 48 years old) orders her drink: “A coffee… No, a tea… No…”.
She closes her eyes, as if she's searching for the word behind her eyelids.
She takes a few seconds, but she finds it.
"Mint," she clarifies.
An infusion of mint pennyroyal, please.
She smiles and says a phrase that she will later repeat throughout the interview: "That's life."
María Luisa actually prefers to be called Lu, because it is shorter and easier to pronounce.
For four years she has had aphasia: a cognitive disorder that affects speech and the ability to write or understand oral and written language.
It is the same condition behind American actor Bruce Willis' withdrawal from the cinema.
"For us every word is a mountain," she describes Lu.
Lu's aphasia comes from a stroke he suffered at the age of 44.
It was the night of May 22, 2018. She was finishing work when she suddenly noticed that he couldn't move his right arm.
Her husband recognized what was happening to her and quickly called an ambulance.
A few days after the stroke, Ella Lu tried to ask her nurse for cookies with milk.
It was at that moment that she realized that she was not understood.
In her head she was speaking as she had always done, but the sounds that were coming out of her mouth were unintelligible.
“I had to draw the cookies and milk, but in the end they understood me,” she recalls with a smile.
Those days in the hospital she could only say three words: girls, water and thank you.
More information
Bruce Willis retires from the cinema due to suffering from aphasia, a disease that affects his speech
Aphasia is common after brain damage, such as a stroke, a serious blow to the head, a tumor or an infection in the brain, among other causes.
In fact, between 21% and 38% of patients who suffer a cerebral infarction develop this disorder.
In Lu's case, he has several difficulties.
"I can't speak well, I can't write anything and I can't read much," she explains.
For example, she prefers to receive voice notes instead of written messages on WhatsApp.
For her, specifying the day of the week or forming a sentence with numbers is like speaking Chinese.
She communicates in short sentences.
There are times when she loses her words and she goes to draw with her finger on the table until the other person understands what she means.
In August of last year, Lu founded the Hola Que Tal - Aphasia association, an initiative that was born from a personal project in which she recorded videos of herself explaining what aphasia is.
The videos were only going to be for her family and friends, but she saw that they could be a resource for many other people.
The association is now dedicated to making visible what this disorder is and what it means to live with it, both for those who suffer from it and for their relatives.
Lu has several projects in hand, such as creating "the Google of aphasia", a search engine for resources, such as therapies, support groups or workshops, for those who need them.
She has also been promoting the declaration of June 28 as aphasia day for four years.
"I felt a great grief"
“Aphasia affects me in everything”, summarizes Lu.
She stopped doing a lot of things after his diagnosis.
He was working in an innovation company, and he had to leave.
She loved to do theater with her friends, but she too left that behind.
She spent hours talking to her friends, which she couldn't do anymore.
But her biggest concern then was: how to be a mother with aphasia?
When she suffered the stroke, her daughters were one and three years old.
She thought that she could no longer read him stories or explain to him what they should and should not do.
"I felt a great mourning, for everything," she says.
“But now I understand that I am his mom.
Even though there are things I can't do, they help me.
I ask them what things are called and they tell me”, she shares.
Lu credits the support of her family with being able to adjust to this new phase of her life.
"It took me a month to be able to say my husband's name, but they accept me," she says.
Before the stroke, Lu spoke six languages.
"Now I say that I speak seven, with aphasia," she jokes.
The curious thing is that, according to her, speaking so many languages helps her because some words are easier to say in French or Catalan.
For example, the word butterfly.
He can't pronounce it in Spanish, but he can in French
(papillon).
Lu admits that every night she ends up exhausted because her day-to-day life requires enormous effort.
Still, he stresses the importance of at least trying to communicate with others.
People with aphasia “have to speak, with words, with their hands, with drawings, whatever it is”, he insists.
In addition to going to the speech therapist, Lu also recommends finding activities that allow you to relax your body and mind.
Her favorites are swimming and yoga.
“They help me because they give me peace,” she explains.
After living with this condition for almost four years, she Lu wants to convey that it is not something that prevents a person from leading her life.
They are people who simply take time to find the words or who cannot read the menu of the day.