When doctors told Francisco Luzón, 72, he was dying, he didn’t believe them.
But after denial came fear, and after fear came frustration, and after frustration came sadness. Then, finally, Luzón resigned himself to his fate.
Luzón no longer speaks. He can move only a single muscle - his iris - and it is with this that he communicates. He can no longer breathe by himself, relying on a machine that is linked to his trachea.
In the morning, a crane is used to transport him from the bed to the sofa. In the evening, the process is reversed.
He is no longer "from here to there" says his wife, María José Arregui.
Luzón suffers from motor neurone disease, a degenerative disease that paralyses all the muscles in the body but leaves the mind unaffected.
Around 4,000 people in Spain suffer from it, with an average life expectancy of five years. Every day, three people are diagnosed with motor neurone disease, and three people die.
Luzón - who is able to speak using a tablet that monitors his iris as it selects letters on a keyboard - describes it as a "perverse" disease.
After his diagnosis, Luzón sought a second and a third opinion, travelling to two hospitals in the US, both of which confirmed it.
It had only been two years since Luzo had left Santander Bank with a sizable retirement package, and he was still active professionally, serving on boards of directors and advising large companies. He did not stop until he had to stop.
He and Maria also founded the Luzon Foundation, for which she is vice president and spokesperson. For Maria, the fact that the couple is so financially secure is a blessing, but she fears for those with the disease that do not have their resources.
"What determines the survival of someone with this disease is economic capacity, it's that sad and that hard," she says.
A well-attended motor neurone disease patient, with the necessary resources, has a life expectancy far superior to those who do not have the economic capacity.
“Our economic situation allows my husband to be attended by caregivers and professionals 24 hours a day. Not all motor neurone disease sufferers have these capabilities,” she says.
One of the Luzon Foundation’s aims is to guarantee resources for those with the disease who choose to live.
Hold on to life
Luzon wrote a book about his struggle with illness, in which he admits that he thinks about death every day - but only for five minutes.
"My husband is a person who clings to life with enthusiasm, but I personally understand that not all people have this capacity and this inner strength," says María.
As such, they have never considered euthanasia as a way to end Luzon’s suffering. Luzon wants to live for his family and, especially, his wife.
“The sick person beside me is a person who wants to live and has the energy to do it. I don't know what someone who doesn't have this predisposition can feel, but that doesn't mean we don't deeply respect people who do want to end suffering,” she says.
"My husband always says, first let's talk about dignified life, after dignified death."
The couple agree that while they have not considered euthanasia, those who do want to go through with it should be allowed to under law.
Despite Luzon’s decline, there are still things about her husband that have remained, says Maria.
“He smiles and his eyes are still alive,” she says.