Multiple sclerosis to cure healthy people

The writer Pilar Orlando at the Venice Biennale.

Courtesy of the author Ana Serrano

Pilar and I are in a dirty bathroom in a tavern in Palermo.

This was more than fifteen years ago.

If your friend has multiple sclerosis, problems with sphincters and hardly any strength in her legs to help support herself in a bathroom, you value both the issue of toilet paper and the fact that there is a bar to hold on to as well as a latch that works ... But above all of everything, there is the width of the door, that the wheelchair can pass, please.

Of course, there was nothing in that toilet and there was nothing.

Then Pilar told me: "I just made a wish."

"Health is very relative.

Who is the healthy one?

We only decide that ourselves, ”Pilar tells me shortly after leaving confinement, one afternoon at her home.

We drink white wine, the same as in Palermo, as always when we see each other.

"Who says no to another drink to someone in my state?" She jokes capriciously.

Also, this afternoon we toast a wish just fulfilled.

Pilar has just published her first book,

Malte lives in my garden

(Chalk Circle).

It seems to me a literary event because he has been able to write about sclerosis without making it the protagonist of his work.

And so he has shown that salvation, like hell, is made of words.

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• "Technologies applied to health advance fast"

Pilar, who now writes with only two fingers because the others do not have enough mobility, sent me an email a few days ago entitled "Presentation" with a precise decalogue on the meaning of MS (Multiple Sclerosis) that she wanted us to handle during the presentation of your book.

We have read it together in Madrid and soon also in San Sebastián, because now we are

on tour.

But I also want to share it here so that you can see how where it says EM we could read ELD (Long Term Disease) or simply LIFE.

Because deep down, life is also that, a long-term illness (at best).

1. Being affected by MS (Multiple Sclerosis) is not being sick.

Not at the time of diagnosis, not 30 years later.

2. Engaging in being sick only leads to self-destruction.

MS just takes you where you want to go.

3. There is a long life ahead for a person with MS.

I have seen my brother and many friends die and yet I am still here, with my full life.

4. The body is not that important, even if it seems so.

You don't have to look at yourself so much, you have to overcome your body.

It bothers us all and something hurts us.

Listening to it too much only makes us worse.

5. The family has to listen but not sympathize.

Nor do you have to be overprotective and keep an eye on how the person with MS is doing all day.

The more we talk about health, the more everything hurts.

6. Losing faculties is not so serious, it must be borne in mind that everyone loses them.

The important thing is to know what the strengths of each person are, both physical and mental.

And look for alternative ways to do the same as always, but in a different way.

7. MS is called Long-Term Disease, so you have to be very patient.

Both the affected person and their family need to know that there will be changes.

But the change, although it seems very bad, is never that much.

You always have to keep perspective.

The rest, those who do not have MS, have other things, other changes, sometimes worse.

8. The body, it is true, limits if it is damaged.

But we would never know how healthy it would limit us.

The mind is what gives us the strength to act, we must never let ourselves be carried away by the body.

9. If necessary, all weapons must be used to combat the body: drugs or psychological treatments.

Those that are needed and when they are needed.

10. A diagnosis is not a sentence that directs our life.

Having MS is a big chore, but believing yourself to be a sick person is worse.

Those of us with MS are not sick.

We simply have another condition.

The problem is that in this century of immortal aspirations, the word disease is not something that is part of life but something that threatens it, so that we remove it from life as a distortion, an evil that has come from another sphere of life. reality, unexpected and spontaneous with which we also hope not to have to deal with. And so to the point where we delegate our health to authorities that are dedicated to acting on their own hand in hand with a cohort of experts, interests and ideologues who end up turning health into a political issue. It is what is known as biopolitics: power fierce with the body of individuals. When and how you live or die is something that, for example, no longer decides one. Nor was the gender to which one belongs until recently a personal decision.Biopolitics runs through life like the God of the Old Testament. It takes care of all bodies and takes care of each body in particular, it goes through its flesh and its time, its activity and its destiny.

In such a world, the disease is full of marks, it does not matter if it is called AIDS, covid, cancer, drug addiction, multiple sclerosis or cystic fibrosis. There is always a brand, sometimes you see more and sometimes less, but it always arrives loaded with ideology. And meanwhile medicine strives to separate healthy individuals from sick ones like one who pulls weeds. As if evil herbs could exist without someone to name them. That is why when you are sick you not only suffer from your illness. You also feel little useful, little capable, diminished in your strength and of course you feel the guilt of having failed yourself. That is why it is so important to accept illness again as an inescapable part of life. And for that the only medicine available is still words.Doctors — who don't always know it — need them to heal and to care, and we need them to understand life. For all these reasons, I encourage you to read Pilar Orlando, an excellent vaccine against the dogma of the disease. What we need.