PD.004 — PD: Death, Sickness, and the Cunt.

We arrived in Copenhagen at six in the morning. We had to be at the bank by eight. She was at the front desk—our Danish colleague. We had agreed to meet an hour earlier to go over the meeting.

Two Spaniards. Andalusians. We fly from Stockholm. Little sleep, a lot of coffee, the body still in another time zone.

Look at my friend and do what all of us do a hundred times a day: Hey, how are you?

He doesn't give her a compressed JPG. He just hands her the RAW file.

How am I? Fucking wasted. My mother just died. And here you have me, at this obligatory meeting, when I should be with my people. Sad, overwhelmed, a fucking piece of shit, basically.

She was expecting a 340-kilobyte file. Instead, she received the original version of a SpaceX photo—one of those that’s fifty megabytes and can be zoomed in on so much that you can count the screws on the rocket.

Outwardly, she didn't flinch. Unflappable. Danish.

Inside I saw her jump onto the ledge of the fourth floor of the bank, like a cat being shown a tidal wave. Silence. Muted.

I started laughing. That kind of laugh you get in school—the one that gets louder the harder you try to hold it in in front of the teacher. Not because of his mother. Not because of his pain. Because of the short circuit.

I had opened the door to let in a little fresh air. Gone with the Wind came in. The whole thing. Uncut. And it took her away.

Asking isn't conversing

I don't care who was right. I care about what happened to that conversation. To the verbs.

The question was normal. The answer was too. The weird thing is that one wasn't prepared for the other.

Asking questions and having a conversation are not the same skill.

To ask is to open a door. To converse is to accept that someone might come in. And it’s not always the person you were expecting who comes in. Sometimes a dead mother comes in.

Asking is easy when you aren't prepared for the answer.

«"How are you?" often means: Tell me you're okay. Or at most: Tell me you're just so-so, but in a way that I can handle.

My friend broke the deal. He took the question seriously.

We think we are asking. In reality, we manage the type of response we are willing to receive.

The movie or the trailer

People ask me a lot about Parkinson's. It doesn't bother me. On the contrary, I like it when they ask me. In fact, I usually answer with another question:

Do you want the movie or the trailer?

Short or long answer. They often stay quiet.
The short answer is easy: "Fine, thanks."«

The long version is three hours. Sit down. Hold onto your pussy, because it's going to drop to the floor. And you have to dedicate the time to me.

I don't hide Parkinson's behind a JPG. I talk about it because silence breeds ghosts. If no one tells what it's like to live with a disease, the disease ends up being what others imagine. And we usually imagine pretty poorly what we don't know.

So here's the story.

I'll tell you what my Parkinson's is like right now. And I say "right now" because it gets more updates than Google Chrome. And you don't get to choose them.

There are usually four things people mention: it's hard to button a shirt, walking is difficult, their voice gets hoarse, and their body stiffens up.

Here it is in more detail. I say "my Parkinson's" on purpose: I have many friends, male and female, with the disease, and each one is a world of their own. There are millions of people with Parkinson's in the world. Millions of different Parkinson's. This is mine, in year six.

Asking for the full movie is like trying to open an airplane's black box. It's all there. Unedited. Here's a sneak peek.

Holding it in until I can take a dump when the levodopa hasn't kicked in yet late in the morning.

Staying silent in a conversation—not because I have nothing to say, but because I don't have the energy to join in.

For two and two to make five, and for me to be okay with it. Peace before reason.

Fear. Some days, terror of going out into the street.

Conserve words so as not to exhaust myself. Choose the ones that won't make me spit in the face of the person in front of me.

Losing my balance on the street from turning to look at a pretty face, a dog, a tit—two—, an ass, a tall tree. The more I turn my axis, the closer the wipeout.

Leaving pill bottles all over the house, like cheese traps for mice.

At midnight, the traffic goes faster than my feet. Between falling down or pissing myself, I'd rather piss myself. 

Going from five jerks a day to not touching myself in months.

Wanting to tell a funny story to a child and having it sound like a Stephen King novel.

I could go on. Parkinson's has a long list of symptoms; I would make a much longer one. And I've seen peers in worse places.

And yet I give thanks. And I love myself.

Because there are times when I am very capable.

Capacity is not a snapshot

What I am not going to do is become the poor man who got Parkinson's at forty.

Because that sentence seems to come with an entire biography for free. Poor thing. He got Parkinson's at forty. His life was ruined.

Yes. And no.

Yes: you just read it. The body changed. Life had to move around it. And no: from there to saying that my ability has disappeared is a huge leap.

Parkinson's has changed some of my capabilities. It has not exhausted my capability. I keep thinking. I keep creating. I keep desiring. I keep learning. I keep traveling. I keep being curious.

And I've had to develop capacities that I didn't even know existed before. Observing the body. Anticipating. Managing energy. Finding another way to start, to keep going, to rest, to move, to speak.

It is not a story of self-improvement. I don't need Parkinson's to make me someone extraordinary.

It is simpler. Capacity is not a snapshot taken before the illness. It is alive. It is lost. It is preserved. It deteriorates. It adapts. And sometimes it appears right where it wasn't needed before.

«He has Parkinson's.» Okay. He also has illusions, friends, projects, bad moods, desires, curiosity, damn good days, and days of shit. That's also Parkinson's. Or better: that's also living with Parkinson's.

The question in bed

And now the other question. The one about sex.

We are in bed. My head between her legs. The rhythm already started.

And suddenly I stop and ask:

How do you like to have your cunt eaten?

I'm not asking because I don't know how to eat pussy. I'm asking as a provocation. To see what she does with the question.

It is the same gesture I make with my hand. Sometimes, before starting, I touch the clitoris with my left hand to see how it responds. My motor response. Whether the hand is there today or not. A small test before the action.

I do the same with her, but on the inside. I’m not looking for instructions. I’m looking for her emotional limits. Whether she can handle an uncomfortable question. Whether there is a sense of complicity. Whether she has a sense of humor and knows how to gracefully get out of things.

Because a question says more about someone than their answer. How much space there is between two people. If you can be naked without taking off your clothes.

And sometimes the best answer isn't even an answer. A wink. A raised eyebrow. A hand on the back of my neck that puts me back in my place.

Or a graceful exit:

You looked better when you kept your mouth shut, motherfucker. I'll tell you after I eat.

And we keep going. That's also conversing.

The elephants

That is why I am interested in putting both things together. A neurodegenerative disease and a conversation in bed. A dead mother and a question about desire.

They couldn't look more different. One weighs tons. The other looks like a toy.

But both are elephants. And elephants don't disappear just because no one names them. They only become harder to walk around.

Disease becomes an elephant in the room when everyone knows it is there and no one asks. Sex becomes an elephant in the room when everyone knows it exists and no one says what they truly desire.

Not talking about something doesn't make it any less present.

It makes it more unfamiliar.

And the unknown is frightening.

The invitation

When someone has Parkinson's, some people ask «how are you?» and don't know what to do if the answer is «today I'm scared,» or «today I don't trust my body,» or «I don't know how I'll be an hour from now.».

The question ceases to be courtesy. It becomes an invitation. And an invitation has consequences.

The perfect phrase isn't necessary. Advice isn't necessary. Sometimes capacity is simply not running out of the room. Staying. Asking something else. Listening. Accepting that for a while you won't be able to fix it. And that maybe you don't have to do it either.

Something similar happens with sex. Not because pillow talk carries the weight of an illness. It doesn't. That's why I'm interested. The gravity of a subject and the difficulty of talking about it are not the same thing.

There are extremely serious conversations that some people hold without turning a hair. And trivial conversations before which they remain silent. The problem is not in the topic. It is in what the topic asks of you.

A true response asks for presence. It asks to let go of the persona. It asks to admit that you don't know. It asks to hear something you didn't expect. Sometimes it asks to show a piece of yourself.

That costs much more than asking.

To stay

That is why there are so many automated questions. How are you? Is everything good? How is it going? Do you like it?

Social doors. We open them all the time. But there are people who only know how to live in the hallway. They don't go in. And they don't know what to do when someone else does.

I'm interested in that ability. Not the one to ask. The one to stay.

To stay when illness appears. When fear appears. When desire appears. When the person in front of you ceases to be comfortable, predictable, easy to classify.

Conversation is not exchanging information. It is a small test of trust. I tell you something you might not know about me. And you decide what you do with it.

You can condense it. Change the subject. Tell a joke. Look at your phone. Send me some «encouragement» back.

Or you can stay.

And when someone stays, something strange happens. The elephant starts to lose size. Not because it leaves. The illness is still there. The desire is still there. The fear is still there. But it stops being an unknown animal wandering around the room. Now it has words. And what has words can be shared.

Make habitable that which is difficult to talk about.

The door is easy. What's hard is staying inside.

Can you stay?