" I will always know to step aside. It's something you don't forget, like swimming or riding a bike. ”

 

Lois Pereiro in Conversa Ultramarina

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  A) My disease within me.

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1. My disease is an essential part of me. I have had a disease before I had a name​.

 

 

1.1   Being congenital it ends up defining my character, sometimes my appearance. It delimits me, it is a constant point that keeps me in the time and place where I really am. As much as I change in every possible way this is my basis: I am diseased

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1.1.1 This reaffirms me in being me, beyond any will I may have. It is a part of me that I share with my environment and I can only analyse it. It is a factor that dilutes the rest of my way of being

 

1.1.2 The certainty of my disease causes me rejection. I don't like the sound of my heartbeat because it reminds me of my cardiopathy

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1.2  I read Lichtenberg's Aphorisms at a time when I had decided not to take the pills my cardiologist had prescribed. It was partly for fear of the contraindications they might have, but above all I didn't want to have that reminder of being sick every night. When I read the book I stopped at an aphorism in which he used the concept "Skeleton of Character". He explains that within each person there is something unbreakable that keeps him/her/them being who he/she/they is, above his/her/them circumstances. It caught my attention because at that point all the texts related to his illness had already appeared. I have no doubt that this skeleton was in his case his physical ailment. This connection was part of what made me write about my heart.

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2. From the disease derives the rest of the characteristics, the social behaviour is conditioned by the physical ailment.

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2.1  In the second aphorism of the book Lichteneberg describes himself in the third person. In it, he begins by saying "his body is made in such a way that even a bad drawer in the dark would draw it better", the first thing he resorts to in order to look at himself from the outside is his state of health. 

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2.2 I relate my cardiopathy to being quieter and more reserved than I would really like to be.

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2.3 Part of a nostalgic attitude that has accompanied me since high school comes from thinking that as a child I was less aware of my cardiopathy. I don't know if this was really the case or if I needed to see it that way. My parents never hid anything from me and I had a good childhood.

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3 . The limitations with which one is born condition one's routine and places. In a more tenuous or more abrupt way they are always here, marking my actions. It is a vital part of what remains in me, a kind of limb over which I have no power.

 

3.1  As a child I was obsessed with playing on a football team because the other kids could and I couldn't. I remember one child in particular who told me that my heart was an excuse, that no team would want me anyway.  When I was older I was able to play in two very small neighbourhood clubs, against medical advice. In the first one, I was twelve or thirteen years old and they were all friends from my school. They knew about my heart disease and the coach was very afraid to put me on the pitch. In the second one, I was finishing high school. I didn't know anyone and, without them knowing about my disease, I played almost everything.

 

3.1.1 Before a game, my father and I explained to the coach that I was born with a disease.Training weeks later, a colleague complained about the intensity because he had already heard about my heart problem.  At that moment I felt an inconvenience and an uneasiness.  

 

3.2 This year, when they started giving medical advice on TV, my mother told me with concern that I had to follow it because "even healthy people" had to do it. Since I was a child I felt this separation between healthy and unhealthy people. I was always in the second group, only the fact of being sick makes the first group noticeable.

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3.3 Congenital disease is accompanied by a feeling of dependence. Not only do you need other people, whether professionals or loved ones, but also pills, check-ups in the same city, medical tests and certain habits or customs. One is never independent of one's disease. You cannot develop in a way that is external to it. That is why you can hardly see the world without taking it into account. I feel that this increases in periods of low self-esteem and doubt.

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3.3.1 Today I live in another country and we always try to make appointments with my cardiologist, or tests such as the Holter, coincide with Christmas. It is not easy, I am grateful that the health staff help us so much in this matter.

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3.3.2 “The worst thing about my illness is that I no longer think or feel things without partially feeling myself with them. I am aware of all the suffering, everything becomes subjective in me. Everything has a reference in my sensitivity and in my illness. I see the whole world as a machine that is there to make me feel my illness in every possible way. A pathological selfishness. It is a very sad situation.” Lichtenberg's illness acts as a forced intermediary between him and his more direct exterior, it is attached to him without letting him see the reality around him. 

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3.4   I have been wearing the Holter since I was born, more or less frequently. It's a portable device that measures my heart's activity over the course of a day. They stick it on me with the same electrodes that they put on the electrocardiograms and then I have to write down at home what time I sleep, when I go upstairs or when I eat. When I was a child, my mother used to stay with me in the Hotel of the Patient at the Juan Canalejo Hospital in A Coruña, because it was a really big device. She tells me a lot about how I used to make jokes about being from ETA and carrying a bomb, but unfortunately I don't remember much. I also recall that I went to play with it several times, on the pitch where I trained, and that the kids were always very nice. Over the years, it has become a very small thing that you can put in your pocket without hardly noticing the wires.

 

When I was studying in Madrid, I missed two days of my Drawing class because I had to wear my Holter in Vigo. In the next class, the teacher went crazy and shouted at me that I couldn't pretend to pass his subject by skipping class, if it was for medical reasons I had to assume my bad luck.  

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4. The impossibility that comes with physical illness makes the division between body and thought more abrupt. 

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4.1   When the most sensitive part of us moves away from our thinking we lose the basis for contact with our most direct environment. We become more individual and somehow incomplete. The gap between these connections is covered by a body marked by illness.

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4.1.1 In another text, Lichtenberg excludes his body in order to refer to himself:

“We two, me and my body, have never been two as much as now. Occasionally we don't even know each other, and then we run against each other, so neither of us knows where we are.”

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4.2 We cannot see the inside of our body with the same familiarity as the outside. That's why I approach the affected organ thinking it as something else, something much clearer and less disgusting (that comes from the world outside my body). Lichtenberg recreates his physical condition by making an artificial flower out of dry leaves from the ground which he then gives to his wife. It is one of his most precious aphorisms.

 

4.2.1 If I think about my body I see a deformed ventricle and a Gruyere cheese. A cardiologist to whom I have a certain affection described the malformations of my heart disease as the holes in this food. I cannot think of myself without taking into account that I was born and I am going to die with a heart that looks like cheese.

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5 . The malformations of my heart are not seen on the outside and do not hurt either. On seeing me no one would say that I am diseased, I myself end up trying to make it so.

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5.1  I liked running so much because the saddest thing for me was to give pity of any kind. I hated that the mothers of my friends took pity on me and that people outside my home tried to take care of me, even though I now understand that there was no evil on their part and that I was somewhat selfish. When they noticed that I was moving around without getting tired I thought they saw me as someone healthy. In fact, I was a very thin but fast and agile boy, I loved it when people were surprised by how much I ran.

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5.2 What hurts about my pathology is not seen. It is the feeling of differentiation that it produces, the fact of knowing that it doesn't stop. You are born and die with that mark. The greatest fear of congenital disease is the constant wear and tear it generates; the feeling of withering away with every year of life is truly sad.
 

 

                                B) All pain is real.

 

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I know that there are many positions from which to live the illness, although I focus on the relationship of the patient with his/her/them environment. I also know that I always do it from my situation, thinking about specific moments that I sometimes describe and others that I don't.  That is why I also need to clarify that this is not something I live alone, my disease is a shared experience and I must make it visible as such. It has cost me more than it might seem to realise this, even today I find it difficult to have a look that does not start from me as the centre. I am sure that if my disease were not congenital, my behaviour as a patient would take more account of the people around me, as I am now trying to do. I think that reading Lois Pereiro in Conversa Ultramarina made me more aware of the affective behaviours that surround the sick person.

 

“My life is no longer mine, this last chance of my existence does not belong to me alone, but to all of you who love me.”

 

The disease surpasses the person who suffers it, its effects are too complex to be summarized in a patient. I would like to broaden my view, taking into account that it is not only the person who has the disease who suffers from it. In my most direct family, I was able to progressively experience pathologies that were thought to have been overcome as a child and which later returned, as well as some new ones that suddenly appeared and completely changed the entire structure of the house. By living this situation I realized how wrong it is to see my cardiopathy as mine. All diseases have the capacity to alter, they necessarily create new ways of being close to others, to the spaces in which we live and to our actions.

 

The powerlessness that comes from seeing the illness of a person we love is a pain that acts on the relationship we have with him/her/them. That is why it sometimes hurts in such an untraceable way. The connection with the sick person is extended, our way of being with him/her/they is new. There is a transformation in both people in which the healthy person approaches the ill one. If the relationship is very close, one may even become afraid of seeing oneself reflected in the loved one, in a kind of cyclical vision of the illness.

 

These changes are especially visible in cases of acquired disease. Here the patient can compare himself to a previous health situation, while his environment understands that past as normal. When a person is born ill, it is easy for people to end up associating them with his/her/them illness, but in the opposite case it is a novelty that alters relationships with other people.The feeling of differentiation arises more abruptly and violently, everything is less certain. The relationship with oneself varies from that moment on, not being able to do what one did before makes this pain more acute. Whether the disease has a cure or accompanies oneself until the end, the process has a pre and post situation. Again, I saw this very clearly when Lois Pereiro talked about being “Too long between two lives.”
 

This duality is also experienced in a more physical sense. If we continue reading Conversa Ultramarina we will see that he talks about being born twice "once from my mother and once from myself". This change that the diseased person suffers can make him/her/them look like someone else. This is definitive, even if you get over the illness you cannot go back to being who you were before. The speed and novelty of the disease can transform the body into someone else's and, beyond the fact that the effects are more or less visible, this is also perceived by our direct environment.

 

It happens to me that when I write thinking about my congenital disease I end up focusing on the affected organ. I try to be concrete and analyse everything, but when I think of my heart as such I end up resorting to metaphors like that of the cheese. If this illness were acquired, the new places and habits that it would lead to- I think for example about the hospital, the consultations or the medications-  would have even more weight in my vision. Lois Pereiro talks about her medical check-ups as going to the car workshop, it makes the situation he lives as a person more visible than the fact of having an illness or another. He writes about how little he cares about "the final breakdown". In this context, although the thoughts he writes are directly related to his exterior, the hospital becomes a kind of container of the world for him :

 

“It changed my mind and my perspective on life so much that the only time I was alone in a room I slept worse without seeing a partner in the next bed, we never connected the TV, and my kingdom was the corridor and the hall. ”

 

He painstakingly describes his roommate and his conversations with the nurses. Earlier, he added "I am sure that in my hour I will die from my death, as Emilia would say". In the hospital he ended up referring to people close to him as if this made him accept his situation in company, in a less crude way. It is especially beautiful when he writes about his friend Ramon, who had already passed away. He takes great care of every image he generates of him, especially from when they were children.  At one point he says "Keep a good place for me there, next to you, but don't make me dizzy anymore Ramoncinho". In all these writings there is a feeling of general ailment, being able to look at his situation more broadly.

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The disease expands the need to be loved. This is yet another way in which it changes our view of our surroundings. Being a newness, it magnifies the fear and loneliness it produces. Loving helps us to have life beyond the treatment, to be able to feel that we are still in the active part of the world. This is a very global feeling throughout Lois Pereiro, in some parts he seems to want to stay alive through his loved ones:

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“I need someone - whether in my right or left hand - to tell me or make me feel confident that they love me: a call, a tactile thought.”
 

One of the conclusions he draws from writing these texts is that everything that was loved will remain. The illness has a very clear temporal sense, the future weighs much more than in a healthy situation.Thus, I see in the sense of permanence of which he speaks a way of fighting. The perception of time corresponds less and less to that of the clock. It becomes really complex to look beyond the immediate present, and when we can do so we give a lot of importance to the future without us. We become aware of how little capacity we have about our situation. 

 

“Because I must write, leave something behind me; and relax, and be honest, and let everything I write remain true.

 

In these letters Lois already thinks a lot about Raymond Carver's unfinished poem, which he will use to open Poesia última de amor e enfermidade. The fear of not being able to imagine our future can be calmed by having the certainty that, whatever happens, we were felt by someone other than ourselves.

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“And did you get what

you wanted from this life, even so?

I did.

And what did you want?

To call myself beloved, to feel myself

beloved on the earth.”

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