Chapter 27

We are family

Illustration de Paloma Agüera

Moving Forward Meeting

Madrid, July 2023

A group of people who share distant ancestors, fears, doubts, and the need to understand, sit together for the first time on chairs that form a circle. During the first few minutes, while everyone arrives, there are some silences, trivialities in the conversation, “how was the trip”, “how hot it is in the capital”, “apologies for the delay”. The shy glances at each other, the measured, superficial phrases, the normative conversations, the “nice to meet you”, wait for the opportunity to expose themselves in this space which is unknown to us, despite the common things, despite the fact that only we, people who have never met before, speak a language that can only be understood in this room.

The arrival of the psychologist, who will act as presenter, moderator and friend who knows all the individual stories of those present, breaks an ice that was eager to crack. Now all eyes, no longer shy, but hopeful, are fixed on him, who smiles and transmits his happiness to be present, because some have come from so far away, to face what makes us and can do us so much harm.

– How do you feel? – he asks, inviting others to speak.

Silence, half smiles, the ice is not that broken after all.

– I imagine there are nerves, doubts, but also a strong desire to share how we feel about the disease, about life, about our relationships – says the psychologist to incite the conversation – you all have so many things in com…

– I am afraid – says a young girl nervously, interrupting the specialist – I am very afraid – she continues, after saying that the result of her genetic test is positive – but the therapy has helped me not to anticipate, to enjoy my partner, myself more, to know that there are more people like me, when I thought I was alone.

She apologizes for the tears that accompany her words and hides her eyes for a while until she hears tears like her own that speak to her, that are understood through that language that we have all known for a long time but that today is the first day that we are beginning to use. Behind each of our eyes, some wet, some soaked, there are conversations that have not been understood out there, deep, genetic fears, shared stories, parallel lives, the same hourglass, a clock’s second hand, dreams broken by the weight of the chromosome, the same opportunity costs, the same somatization, the short life, the ceaseless search for intensity, the guilt at the impossibility of always being happy, the constant pressure of old age, the legacy, our children, the anticipation, dying on our feet or ending life bedridden.

After the joint crying, the wordless conversation, there was no more silence until we said goodbye, no more compliments either. Just pure, full-throated, open-hearted conversations about our lives. Refuting what one said, illustrating with an example what had happened to another one in another time, in another place. Laughter for our misfortune now that it is not so strong because we have each other’s company. Agreements on the somatic: the stumbles that seem like warnings, the mood swings that are only fears, or boredom with the system that we have created and that prevents us from living (we are lucky to know all the value that this verb has). Although now it is much clearer to me: To live, even if I thought it was impossible that people who had the test in their hand could keep smiling, have children, get out of bed, prepare for a competitive exam. To live, even if imagining what awaits you makes it difficult to love, to take care of your loved ones, to wobble in the seconds.

To live for the promise of seeing each other again so that our language does not fall into disuse here, in China, Uganda, Venezuela and wherever this great family is.

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