Arbi decided his end: the voluntary goodbye of an ALS patient

This is the story of Arbi.

Or, rather, the story of Arbi since I met him —one winter morning, at his house, in front of some tea and some chocolate bars that he had brought, balancing on a tray while leaning on his crutch—and the summer afternoon when we said goodbye, over the phone, just a few hours before he was to be euthanized.

During those seven months, we talked a lot, sometimes in his house, a second floor without an elevator in a working-class neighborhood in Madrid, him sitting on his bed, under the poster of his favorite rock group, and me in a chair next to the computer. ;

other times we spent long periods on the phone.

He told me about his life and he asked me about mine.

We also talk a lot about death.

Of his death.

of why

From when.

One day, as soon as I entered his room, he pointed to the almanac and said to me:

“Look, today I should be dead.

The scheduled day was yesterday.

But I have put it off until my niece finishes the course.

He said things like that, without affectation, without drama, but sometimes the emotion caught him betraying him and he stayed silent, with his head down, until he managed to hold the reins.

Like that spring Saturday.

He was encouraged to go down, each step a torture, and we took a drive through Madrid.

He was happy, listening to his music, pointing out a route —”first take the Castellana and then I'll tell you”— which turned out to be a review of his entire life —”I liked to come to read there, I had a car accident there ”—.

In the end, we sat down on a terrace in a good neighborhood, we ordered a glass of wine and we toasted, I don't remember why or to whom, but we did lower our heads and we didn't speak for a long time.

The first news of Arbi came to me through a message from Fernando Marín: “There is a young man with ALS [amyotrophic lateral sclerosis] who wants to give his testimony.

Two months ago he delivered all the documentation requesting euthanasia, but he has not had a response from the Guarantee and Evaluation Commission, which depends on the Ministry of Health of the Community of Madrid.

If you want to talk to him, call me."

That story reminded me of a very recent one.

He had met Marín, a doctor and adviser to the Right to Die with Dignity (DMD) association, a few months earlier.

He put me in contact with a woman in her 70s who suffered from an incurable disease and such terrible pain that her life was reduced to a constant, almost always useless, struggle against suffering.

She had already bought a substance online to end her life when,

In June 2021, the law regulating euthanasia entered into force in Spain.

He then decided to try it by legal means, but despite the fact that he met all the requirements for his case to be approved, neither the Community of Madrid nor the Gómez Ulla Hospital even answered him.

His last distress call was through this diary.

“It's not about a whim,” he explained, “it's that my life consists of trying to suffer as little as possible, and even then my suffering is intolerable.

I don't want to kill myself.

I just want you to help me stop suffering.

Nothing more.

For me it is inconceivable that there is a law and that it cannot be applied”.

It had no effect.

The official response never came and, two weeks and two days after the report was published, she, that woman, asked for a taxi,

He gave the address of a hotel in the center of Madrid and took the substance that he had kept for a long time.

A moment before ingesting that compound he had taken care to place a sign at the entrance of the room, on a chair, asking whoever opened the door to call the police, in order to avoid frightening the chambermaid. .

That woman, according to the law, had the right to a discreet, peaceful death in a hospital bed, but she died as a suicide.

She chose a hotel because she wanted to spare her long-time neighbors "a scandal on the stairs."

in order to avoid the scare of the chambermaid.

That woman, according to the law, had the right to a discreet, peaceful death in a hospital bed, but she died as a suicide.

She chose a hotel because she wanted to spare her longtime neighbors "a scandal on the stairs."

in order to avoid the scare of the chambermaid.

That woman, according to the law, had the right to a discreet, peaceful death in a hospital bed, but she died as a suicide.

She chose a hotel because she wanted to spare her longtime neighbors "a scandal on the stairs."

Arbi is 41 years old, has several days' beard and a ponytail that holds his curly hair.

—It all started one afternoon seven months ago, on the subway.

I had dressed up to go have a good time.

I took out my cell phone to see the nonsense we watch to pass the time and this finger - the thumb of the right hand - began to tremble with a strange movement, intermittent, out of control.

I thought: it must be a nerve thing.

But all afternoon and all night it went on and on, and the next day when I woke up I was still shaking.

From seeing so many series of doctors —smiles— I immediately noticed that it was something neurological, I even thought it was Parkinson's.

I was so convinced of this that I called my private insurance and asked for a consultation with a neurologist specializing in Parkinson's...

"And what did he tell you?"

"That it wasn't Parkinson's."

But he didn't say it with a good face, and I thought: what way to give good news is this...?

He told me that what he felt in his finger were not tremors, but fasciculations, and he asked for more tests, an MRI, an electromyogram... He didn't tell me anything else, but I went back home and started to investigate with the see where those three words fit together—fasciculations, MRI, EMG—and right away I saw that it could be ALS.

Two or three days later, the doctor called me and asked me: do you have a problem if I admit you to do more tests?

And I already asked him directly: it's ALS, right?

Arbi's voice shakes, he clears his throat, he can't keep talking.

She hides her head in her hands and, for the next 12 seconds, the recorder registers absolute silence that Arbi breaks to apologize: “Sorry.

I do remember those days.

I went to the hospital with the fear that the doctor would confirm what I already sensed.

Arbi, at his home, last winter, when he had already processed the request to benefit from euthanasia but it had not yet been granted. Jaime Villanueva

Arbi arrived in Madrid at the age of 16 with his parents and sister, Armenians born in Iran who obtained refugee status with the prospect of continuing to the United States, which is, after Russia, the main destination of the Armenian diaspora and where some relatives already lived: "But we saw that this country was very good, wonderful, and we decided to stay here."

Like many second-generation immigrants, that young man who was already obsessed with music self-taught himself built an identity different from that of his parents, workers with strong Christian convictions and concerned about getting ahead every day in a country and an unknown language.

—It can be said that my religion was philosophy and the love of my life was music.

I started to love music when I was 15 or 16 years old.

I was always a rocker, a very happy person, very fond of going to concerts, places like that, I even played the drums in a group of friends.

I've had a good time.

I was able to have a good time.

I had a full life.

I haven't been one of those who say I'll leave it for tomorrow... That's why now I accept my bad luck, but I don't want to see how this damn disease is killing me little by little.

—When do you start thinking about dying, about asking for euthanasia?

—Since the day they admitted me to do the tests.

I already talked about this issue with the doctor who did the lumbar puncture to rule out other diseases, and it seemed strange to her.

She told me: are you already thinking about that and we don't even have confirmation that it is ALS?

She felt like a bomb that I spoke so soon about death and she asked me to see a psychiatrist.

But I had clear ideas.

I had even thought about it long before I fell ill.

When I watched movies about these issues, like the one by Ramón Sampedro, I always thought: if one day I get a disease like that, I'll also want to die.

I understand, and respect, people who want to stick it out to the end.

What I don't understand is the people who oppose others wanting to take advantage of a right that already exists.

That first interview lasts an hour and 20 minutes.

There is all his past life.

His hobbies —watches, cars—, his jobs —in construction when he was very young, later as a cook—, but above all that, of nostalgia for a life that will no longer be, of anger or sadness , a constant feeling of anguish hovers over the spirit of this 41-year-old man.

It is not even the fear of death, which he seems to have already accepted, but the terror—a nightmare that does not leave him asleep or awake—that the disease will progress to a point that he considers non-negotiable.

-What's your limit?

“I told my doctor from the beginning.

I want to live as long as I am on my own.

As long as I can go to the bathroom, take a shower... It's been a long time since I can drive or walk down the street, but that's not essential.

My limit is the wheelchair.

Before I get to that moment, to the moment when my parents, who still work but are no longer young, have to put me to bed and wake me up, shave me and everything else, I'd rather die.

If it is legal, in a hospital, with all the guarantees established by law, the better.

If not, I'll have to resort to plan b... I have it there, in that drawer, but I wouldn't want to come to that.

I am not suicidal.

I had a life that I liked.

I always wanted to do things right.

And now more than ever.

I would also like that, since I am going to die young, my organs can be transplanted to people who need them...

It is the frantic struggle that, from his bed, armed only with a crutch to move around his house and a mobile phone, he has waged since he was diagnosed with ALS.

He became a member of Right to Die with Dignity, managed to get the neurologist at his reference hospital to sign his petition to benefit from euthanasia —there are cases in which conscientious objectors are declared and the process is delayed even more—, he even contacted on his own with the National Transplant Organization for compatibility testing.

“The nurse almost fainted”, says Arbi with a black humor in which she will lean on until the end as if it were her second crutch, “I guess that woman would never have seen any donor carry the organs personally”.

He only stops smiling when he thinks he won't make it on time.

It was not necessary.

Five days after the interview, Arbi phoned: "I have been approved for euthanasia."

The Guarantee and Evaluation Commission of the Ministry of Health, in a report of just five pages, concludes that the patient suffers from amyotrophic lateral sclerosis, that "the only drug available for his disease does not offer a cure today", and adds that Arbi "shows firmness" in his decision: "He prefers not to continue living rather than lose his autonomy, independence and dignity."

That news gives him back a certain peace of mind, but he immediately notices clairvoyantly:

“It's only the first step.

This road will still be long and will be full of difficulties.

"Do you want us to come with you?"

-Yes.

Doctor Fernando Marín is a calm person, who explains things simply, with a clarity that inspires confidence.

He has helped many people to fulfill his last wishes when they could no longer cope with life, trying to ensure that they did so voluntarily, with full awareness.

And yet, despite his experience, he says that there is something in some way inscrutable, that is part of the mystery, that probably has a different answer for each person.

Why did Arbi want to die?

Why that 70-year-old lady?

Why don't others in similarly deteriorating circumstances do it?

“The request to want to die is made intuitively,” he explains, “no excuses are needed.

But around those questions—why did she decide to die, what are your reasons, your experiences—there are emotions,

values ​​and feelings that we must investigate.

It is about getting as close as we can to the nature of suffering, to the mystery of suffering.”

A couple of weeks later, locked in his room while it was raining hard outside, Arbi shows me an email.

It is from a film production company that offers him to play an extra in a film.

It's not the first time.

Even years ago he had participated in an advertisement for a credit card that was shot in the old Atlético de Madrid stadium, and in which Pelé participated along with extras of different races who simulated playing a soccer match.

"They always gave me the role of Arab", he smiles, "although it is not, but with this look...".

Arbi wanted to show with what, despite his few resources, he had managed to build a life in Spain that he liked, in which he combined small worldly luxuries with the study of philosophy, reading poetry and even the dream of being an actor.

His next life project —and his voice breaks there— was to start a family.

"If what I love most," he says with his eyes always on the handbrake of emotions, "is my seven-year-old niece, I don't even want to imagine what a son or a daughter can be... But that It can't be anymore."

Arbi in the room of the house he shared with his family in Madrid. Jaime Villanueva

During the months that followed the approval of his euthanasia, Arbi fought on several fronts.

And not in all he won.

The first was to find out if euthanasia should be carried out immediately after it was granted —in a week or two, as would be expected in principle for people suffering from unbearable pain— or if, on the contrary, there was any possibility of postponing the death. date of death several weeks or even months.

Fear of not arriving on time led him to stir up Rome with Santiago to get approval, but when it came—sooner than he feared—he discovered that his physical deterioration hadn't increased that much.

Arbi also had a compelling reason to request a postponement:

“My sister has asked me to wait until my niece finishes the course.

And I also want to be at her birthday, which for her is always a special party.

But neither he nor his doctor knew at first whether a postponement was possible, and if so, for how long.

"I hope that, in some way, my effort to point out the parts of the law that are not clear or not even foreseen," Arbi explained, "makes the path easier, less hard, for those who come after."

Arbi got the postponement.

The second front – which took months of phone calls until he got a satisfactory answer – consisted of finding out if the National Transplant Organization had a protocol for extracting organs from patients who had been euthanized.

At the end of spring, in a conversation we had on the phone from Andalusia, where I was doing a report, he announced to me with a certain hint of pride that, by dint of insisting, he had gotten an answer: “You know that I am the one who most question in the world, and I don't stay calm until I resolve all the doubts.

Socrates already said, you have to live an examined life.

You don't have to accept everything at first.

You have to find your Ithaca.

Do you know Cavafy's poem...

?

The thing is, the Transplant Organization people are nice, and although I think it annoys them that I ask them so much about how they're going to remove my organs, if there's a chance I'll wake up, and those weird things that run through my head, They finally answered me.

The one who runs the show has told me that they have already had a case like mine, exactly the same, a man with ALS in the Community of Madrid who also donated his organs.

He told me: 'We thought you were going to be the first, but someone beat you to it, hehe...'.

I told them that this time I had a good reason to finish second, my niece's birthday”.

They finally answered me.

The one who runs the show has told me that they have already had a case like mine, exactly the same, a man with ALS in the Community of Madrid who also donated his organs.

He told me: 'We thought you were going to be the first, but someone beat you to it, hehe...'.

I told them that this time I had a good reason to finish second, my niece's birthday”.

They finally answered me.

The one who runs the show has told me that they have already had a case like mine, exactly the same, a man with ALS in the Community of Madrid who also donated his organs.

He told me: 'We thought you were going to be the first, but someone beat you to it, hehe...'.

I told them that this time I had a good reason to finish second, my niece's birthday”.

The third front was perhaps the one that worried him the most.

But, to put it in his context, something needs to be explained about Arbi's personality.

Arbi was a good man.

As Antonio Machado would say, “in the good sense of the word, good”.

He was angry with the delay of his neurologist in answering him, even because of the bad manners that he spent on some occasions, but he immediately added a justification: “he is overwhelmed.

They force him to take care of something new for him, such as the paperwork involved in euthanasia, but they do not give him sufficient means and the man feels powerless”.

One day, almost at the end, he rang his phone and answered as he always did, activating the speakerphone because he was already having a hard time putting it to his ear and keeping it that way.

So Fernando Marín and I, who were in his room at the time, listened to his interlocutor —a health worker from his reference hospital— rant inappropriately before a patient who had only a few hours to live :

"I'm up to the balls.

If the tests are not here tomorrow, I send everything to hell!

Before our gesture of surprise, Arbi immediately took iron away from the matter: “It doesn't matter.

He talks to me like that because we already trust each other.

And besides, he's a rocker like me...”.

There is still another question that, together with his natural appreciation for his neighbor, should be taken into account beforehand to gauge the extent to which he suffered with what we will tell next.

During the seven months that we maintained contact—from before he was granted euthanasia until the final moment—Arbi never doubted his decision.

He did have low moments when, for one reason or another, he would get desperate and say bitterly, “I'm trying to do everything right, but there's no way.

I don't know if it would have been better to have taken that [and he pointed to the sideboard where he kept the fatal solution] and that's it”.

But right away it passed him by and he went back to trying to build himself, brick by brick, a death that would free him from the ghost of incapacity, but that at the same time would be assumed, understood, by his parents.

That is precisely what his third front is about, the one he failed to win.

Arbi's room was the first on the left as you entered the flat he had shared with his family since he fell ill.

We almost always met in the morning, when her parents were at their respective jobs and we were free to talk about matters that, necessarily, hurt them to hear.

If the death of a child must be unbearable, Arbi's slow, conscious and desired walk towards her was torture for them.

The father, according to her son, often chose to lock himself in silence.

Her mother searched tirelessly among her friends, her co-workers and her faith, a remedy or a miracle.

Arbi saw them suffer, tried to explain to them that ALS has no mercy, that there was no hope, that it was better to say goodbye then than not in a few months, already turned into an unbearable burden.

One afternoon she came and saw me sitting there, as always, at the back of the room, by the window.

She greeted me very kindly and she asked me:

"Don't you find it better?"

Arbi, from the bed, smiled at me: “Do you see what I was telling you?”

Four months after we met, and after a couple of weeks without seeing each other, Arbi told me on the phone that he had suffered a significant deterioration:

—You know I wanted to wait until summer, but I don't know if I'll be able to.

Perhaps the time has come.

And my parents have already seen that this disease really sucks.

They have seen that they give me episodes of suffocation that are terrifying, my stomach almost came out of my mouth.

I gag hard, I choke, I cry out in anguish, my eyes turn red and tears of pain fall.

My parents had never seen me like this.

They are seeing me suffer so much that I think they already understand me more and are changing their minds, that it is better that I don't suffer.

Let's say it had its good part, its positive part...

"And there is nothing to relieve you?"

—I asked the doctor and he said no, but then I looked on the internet and I saw that it was, I called him again and he prescribed it for me.

I could'nt believe it.

I'm tired.

On the one hand I think about throwing in the towel, on the other I have more and more doubts about how the end will be.

Call it fear or whatever.

I suppose that, despite my decision, my body and my mind resist.

The natural thing is that death comes looking for you.

When you go towards her, as in suicide, there is something that pulls you back.

I don't doubt my decision, but I do have questions that no one knows how to answer.

Once they signed my euthanasia, it seems that they forgot about me.

He seems tired, and at times angry with an excessively slow bureaucratic machine for cases like his: “I have always complied, I have paid my taxes, I have never run a red light and now they deny me a dependency benefit with which I wanted to save something to pay for my funeral and not leave that burden on my parents.”

A couple of weeks later, Fernando Marín and I visit him again.

He has already regained his calm, you can even see that he is in a good mood.

He tells us that years ago, as soon as he saw that he liked this country a lot, that he was glad he hadn't gone to live with his cousins ​​from the United States, he asked for Spanish nationality.

"It seems that fate is laughing at me."

They granted it to me when he was already sick.

And a few days ago an official came to sign the papers, because I claimed my illness so I wouldn't have to go to the offices.

Today I received the final documentation.

They have made a mess with the surname, but I am already Spanish.

Suddenly a noise is heard, someone bustling around the house.

We thought we were alone, but it turns out his father was there.

Arbi calls him to greet him.

He walks into the room and shakes hands with us.

I don't remember what we said to her, some polite word, but she barely responds.

She stands in front of her son, sitting on the edge of the bed.

They both bow their heads, and for a few minutes that drag on, we are all silent.

A few days later, we said goodbye.

Seven months had passed since that first time he invited me to her house for tea and chocolates.

"Have a good trip, Arby.

It has been an honour.

-Also for me.

That's why I want to go.

For me there is no longer the possibility of meeting someone new, of doing something new.

Everything is already a dream.

Goodbye friend.

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