Luis's experience in Bucharest: communicating through silence
– Written by the Moving Forward team on 28th October 2025
Today we would like to share with you a testimony that reflects the experience of Luis Aguilar, whom many of you will know as the author of the book Chronicles of a Fortune Foretold, following his participation in the European Huntington’s Disease Association conference held in Bucharest in September under the slogan “Every seed we plant is a step towards change.”
During the three days I was in Bucharest, I took notes on my impressions, on what surprised me, on what made me laugh or cry. Some notes escaped me, but not only because of lack of time, but also because I was talking to people, in a session, in the café, signing a book. I didn’t write most of them down because when I tried to note them down there was a limit, a rational limit; it is difficult for a text, which is ultimately a set of words and rules, to capture the heartbeat, the goosebumps, the incongruous clash of emotions that the conference has brought about.
What I am doing is daring, even though literature has thrived on capturing emotions in words and turning them into a shared space. I imagine that the first person who started writing did so to try to understand themselves, to put into words that indefinable feeling that ran through their body and that they could not explain. But as I listened to someone knowing that they would have this disease, the blank page seemed insufficient. How can I write what I feel when I listen to them? It is something that only a few of us understand… How can I put into words what he, and I speak for Wouter, has not been able to say?
Language, in these cases, can only hinder what our emotions tell us, which are always so sufficient and valid in themselves, so universal. Francesco, you don’t need to learn English. Josefina, your simultaneous translator won’t be of any use to you. You know much more about this than anyone else, much more than the professionals, much more than someone new, with no connection to the Family, who speaks all the languages of the world. Your presence is more than a presentation full of images, data and acronyms. You have said everything you have to say, I promise you. We have all seen it in your sighs and laughter. Those of us who are in this know what it means to move within that broad spectrum. We recognise ourselves equally in fear and in hope. Every gesture you make is Esperanto. You would say less with words.
I communicate with my partner without speaking, and I am lucky enough to do so with some friends as well. But it is not easy to do so with someone you have just met, and even less so with people from other countries who do not use the same codes. In Romania, it was enough for us to communicate through silence. Through dance, even if it was chorea who danced. Thank you, Pili, you move your hips very well. I danced with you, selfishly, as if I were dancing with my father. I’m still looking for a way to communicate with him everything I didn’t when he was here. Hence the book, hence this text, hence going to conferences. I hope that, wherever he is, he too can feel the urge I now have to take other patients by the arm and understand the language we have invented at each conference.
I wish I had learned it much earlier. I have been trying for 34 years to explain my fears, the meaning of life with this sword hanging over my head. Struggling to reach a vital conclusion as if there were only one, as if living were reduced to a single correct option. Trying to rationalise something inexplicable, as I do in these words. I wish I had met you sooner. Each and every one of you writing the text of your life. With all the meaning that each of you wants to give it. Those who are going to travel the world, those who are staying, those who continue to help other patients, even though theirs are gone. All valid. All inspiring.
I have lived wondering if I am choosing my story well. The one I tell myself, the one I live, will it live up to what I feel? Is my daily life enough to tolerate the fear that it will all end? At a party in Bucharest, the negative ones left at 2, those of us at risk at 4, the positive ones hardly ever return to the hotel. A Machiavellian coincidence. Knowing myself, I would have been the last to leave. I would have been tired, or finally satisfied with my choices. Knowing yours, so many and so different, has taken away the pressure of having to find the right one, the time when I should go home.
One afternoon, my fear overwhelmed me, I cried a lot, I called my mother. She told me I wasn’t alone, that she would always be there. “I know, Mum.” I called you so that I could be the one to confirm it, so that you wouldn’t feel alone either. There are many people here who are accustomed to loss, to living in uncertainty, to feeling something I have not been able to explain in words. Although now I can confirm that I am bilingual.
