The Huntington’s disease is, after Alzheimer’s and the Parkinson’sthe third most common neurodegenerative disease. A disease that, being genetic origincan be transmitted from parents to children with a probability of 50%. In fact, it is estimated that around 14,000 people in Spain are at risk of developing it due to having sick parents.
a simple genetic test It serves to clear up doubts about whether the disease has been inherited or not, but many of these people at risk prefer not to flip that coin, since currently there are no specific and effective treatments that stop it or improve its symptoms.
One of those people is Luis Aguilar who, in addition to deciding not to take the test that would clear up – or not – many doubts about his future, has captured in a book, Chronicle of a fate foretoldthe emotions and feelings that, since he was a teenager, his father’s illness has provoked in him.
The author, who collaborates with them, will allocate all the benefits of this work to the Spanish Association Korea Huntington ACHE and the EHA (European Huntington Association).
You have just published ‘Chronicle of a Fortune Foretold’. What led you to do it?I really like to write, I have several things published. At a writing school where I am, I already had the idea of writing the novel I am working on now, but they recommended that I first sign up for a one-year intermediate course with story submissions. In one of the ‘homework’ that they gave us each week, instead of handing in something related to the novel that I had in my head, I handed in one of the stories that I had already written about my father, from the time when I was already in school. hospital. My classmates and my teacher really liked it and I told them that it was a true story. Nobody knew about the disease… so everyone invited me to write about it instead – or before – of the novel I had in my head.
I changed my mind and decided to listen to them, because, in addition, almost everything that is published about the disease is very medical. My weekly deliveries for the course I was taking were the stories that are compiled in this book, and others that I wrote separately, that is why they are so diverse, some are written in the first person, others in the third…, because we had to stick to some instructions that they gave us in the course. All of this: my experience, a narrative workshop… have given rise to Chronicle of a fate foretoldwhich is neither a novel nor a standard book of stories, because it has to be read in order…
Writing this book helped me discover things about myself, about my father… and to put into words things that I had been feeling all my life.
In addition to being a literary exercise, has it served as catharsis for you in some way?Yes, but in reality I experienced that catharsis before, as soon as my father died, when I also wrote some things. When writing this book I had already passed the stage of grief, but it is true that it helped me discover things about myself, about my father… and to put into words things that I had been feeling all my life.
Who would you like to read it?I believe that Huntington can help the community, especially since there are no texts of this style. There is a lot of information on a medical level, but little on an emotional level, and many of us in this community often feel orphaned in this sense, in reading things with which we identify, about why we have certain fears, behaviors, behaviors. …and less things in the first person, written by people at risk, as is my case, who often think that we are crazy for having a series of thoughts or emotions. But the basis of this book is mental health, so it can also help other groups.
Your father had Huntington’s disease, an inherited and degenerative genetic disease. Do you remember how long you have been aware of it?The part of seeing my father sick, although it is true that at one time I turned my back on him a lot, I lived it very consciously because it is a very visual illness, which greatly impacts a person’s life… but the truth is that the part I lived it quite unconsciously until recently, although in some way it has influenced me when it comes to developing certain attitudes in my life, such as the fear I have of missing out on something.
Have you had psychological support to deal with it?Only since my father died, when I got quite close to the association, have I had psychological help, and also since the Moving Forward movement that exists in the European association. It also coincided with the writing of this book, so that psychological process is quite reflected in it. It is translated into English and several languages on the web so that it reaches everyone in the European association.
What do people who have already read it, both inside and outside of Spain, tell you?Precisely, the other day I was in an online reading club organized by the American association and it was a super exciting experience because people with the disease came, family members, people at risk who had been tested, others who had not… and they all told me that They had managed to connect emotionally, they had put into words the emotions that many felt and that they did not dare to verbalize and normalize. And this was very exciting to me, because, in addition, I have received comments from countries like Russia, with which we have many cultural differences, and they told me similar things.
I am very aware that we are all here passing through and I do not want to take the test and, if it is negative, it will make me think that I am eternal
You have decided not to know whether or not you have inherited the disease. Because?
Well, I believe that this decision has been very conditioned by what my mother always said at home, and it is something I talk about in a chapter of the book, but in reality I believe that fear has been a determining factor. And apart from the fear that the test will be positive, obviously, there is also a fear that it will be negative, that this will have an impact in some way on an identity that I have been building for a long time, an identity that I like, in which I I function well and I don’t want it to change. If I took the test, whatever the result was, it would have an impact on my life in a way that I don’t know if it would give me anything. My psychologist always told me that, before taking the test, I should ask myself the question of how this would change my life. I am a person who strives to live day to day, who has built a life that he likes and I want to keep it that way.
Do you think it would change your character, your way of facing the future…?My mind already knows what my Achilles heel is on an emotional level and sometimes it plays tricks on me. For example, in my previous job I was terrible, and what my body asked me was to take the test, so that if it came out positive, I would have the ‘excuse’ to send everything to hell and go travel the world.
I don’t want it to condition me, and that’s why I don’t do it, for that reason, and because of testimonies from people who have told me how having it done has had an impact on their life, even if it is negative, so I prefer not to have it done. Furthermore, I am very aware that we are all here passing through and I do not want to take the test and, if it is negative, it will make me think that I am forever. If we all outgrew something in our future, we would all be paralyzed in some way.
And you don’t believe your father’s illness Has it already marked, in some way, your life decisions: what to study, work, whether or not to have a partner, children…?I don’t know the truth, but I believe that we should not make decisions based on what we believe may happen to us in the future, because the future is uncertain for everyone. And fewer decisions like whether or not you have children because, even though I can develop the disease, I am grateful to my father for having me. In fact, my father survived in some way because we were there, because we went to see him…
I have talked about it with my partner many times and there is no problem for her. Also, in recent years, I have met many people who have decided to have children. They have put in place their measures, such as preimplantation diagnosis, but they have decided to move forward despite knowing that perhaps in a few years they will get sick, because scares and getting sick is something that can happen to all of us. I have seen my father die slowly and I have had many traumas, but also many learnings.
You have a sister. Is she from the same current as you or has she been tested?No, but because she doesn’t want to know anything at all, and I respect her. She knows that I am there for whatever she wants, but, as my psychologist told me, we have to build bridges, but not force anyone to cross them. And I partly envy her, because I talk a lot about living in the present and such, but when push comes to shove, it’s something I struggle with every day, and she really does live it.
Do you often talk to other people at risk?Yes. And my case is quite peculiar, because among the people who are at risk there are usually two profiles, those who take the test and those who do not. Among those who take the test, there are those who test positive, who are quite close to the association, to others, etc. And those who test negative tend to forget about the issue, they ignore it. And then there are those who don’t take the test and don’t want to know anything, like my sister.
Then there are others, who are a minority, like Ruth, the president of the association, who took the test, it came back negative and remains very linked and committed to the disease, and me, who has not had it done and also wants to remain involved.
What other things do you think you have in common?Well, I think there is a series of mantras that we all repeat to ourselves, we share many emotions, fears… for everything we have experienced. The good thing is that for some time now we have been much more united, and that is leading to more visibility and more money in research, and, therefore, more hope.
I went from not wanting to know anything about the disease to approaching the association, writing a book… but there are things for which I am not yet prepared, such as accompanying patients
How is the research into the disease right now?Well, right now there is a drug that is in a very advanced phase and that has already requested the EMA (European Medicines Agency) to approve it, a drug called Prilenia (Pridopidine) and that seems to moderate the symptoms quite a bit. On the other hand, there are more clinical trials that other pharmaceutical companies are carrying out.
There is more hope than a few years ago, and that is thanks to the fact that there is much more visibility, both of this and other rare diseases. Before, and I have experienced it myself, there was a lot of stigma around this disease, because it has a very strong visual impact. We are overcoming that, and that in turn will encourage the disease to take to the streets more, and I say this with all the literalness of the phrase.
Apart from people who are at risk of having Huntington’s, who do you think your book could be useful to?Well, a friend whose father died of cancer told me that it had been very useful to her, and I think it can also help people with depression or other mental health problems…
Will you remain linked to the association?Yes. I would like to do more than what I do, but I do a lot of things, especially with the European movement, Moving ForwardI go to all the events I can, I give talks… What I don’t do, because I’m not prepared, is accompany people with the disease because it affects me a lot psychologically, then I’m sick for a month, so, for now, I prefer to avoid it. I went from not wanting to know anything about the disease to approaching the association, writing a book about it… but there are things for which I am not yet prepared.
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