Interview with Leonor Pérez, author of “My Red October”

Interview with Leonor María Pérez de Vega, author of “My Red October”

By Eva Fraile.

Leonor Pérez, author of “My Red October”: “There are thousands of patients like me.”

Leonor Pérez de la Vega is the author of My Red October and a populariser of chronic pain and trigeminal neuralgia, a condition she suffers from personally. We spoke with her to find out about her situation.

1- How has chronic pain influenced the writing process of My Red October? I suppose that on many occasions you have had to stop, leave it…

In the book itself I mention it, writing in my case has become a therapeutic act, whether in the face of physical or emotional pain, but that doesn’t mean it has been or continues to be easy to do. It’s not a question of sitting in front of a blank sheet of paper and writing, having inspiration like any writer or waiting for the muses to come. As you ask, there is a major handicap, and it is cohabiting with a tireless companion, whom I call my particular squatter, the pain that never leaves you, whether when you write, eat, try to sleep a little, etc. So you have to plan even more, wait for the crisis, when the pain increases more than you have already become accustomed to, because in those moments the extra medication prevents you from reasoning or seeing clearly, reflecting and in a word, writing.

If the life of a patient with pain is not easy on any level, the reader can perhaps imagine the effort behind this writing.

2– What message do you want to convey to your readers with this essay on chronic pain?

That life, which is unique and we only have one, is to be lived, and for too many people doing so hurts too much and is not visible, and worse is that they question how you are coping. I would like this book to be an accompaniment for others, that in my words they find not help as such, because it is not a self-help book, but perhaps a refuge. How are you going to help yourself in the face of something so destructive, or the demands or tyranny of an emotional government, in the face of which, after all, words are powerful.

3- And what about the health situation? What do you want to highlight?

I believe, and many patients comment on it, that there is a clear growing dehumanisation in the current health system. And not because of those who work in it, whom I respect and admire, but there is a lack of human and physical resources. I read some initiatives by specialists such as Dr. Ignacio Vallejo from Seville who on Twitter calls for a #CambiaHospital. If I stop to consider the case of chronic pain, what is being commented on is more and more, with few exceptions, and the great handicap that pain does not know how to wait. We do not have a powerful association that looks after our interests, and although there is a Platform for patient organisations that produces some excellent reports, they remain just news. Then, for example, the societies that should listen more to the pain patient only debate among themselves or with patients who do not deviate from the official discourse.

Meanwhile, the all-powerful pharmaceutical industry is only driven by commercial interests, and there are no other options, and we are also its best customers. And in terms of health, there is a growing and feared inequality in terms of pain.

There is also a lack of political will on the part of those who run the health departments, because it is a regional responsibility. They talk a lot about comprehensive plans for each territory, but they remain on paper and in reports.

Finally, a wish or toast to the Sun, would be to see A national plan against painwith a basic portfolio for everyone and thus avoid the problems mentioned, given that it is recognized as a serious public health problem.

4– In My Red October You speak from personal experience. Is it easy to talk about yourself?

It is not easy at all, and I have even wondered if it was a good idea. As the starting point for publishing this book was a personal blog that I opened, when I decided to put it into a book it was quite a challenge. You expose yourself, and then you hear what you feared and did not want or the eternal word: “patience” or “you will see that everything passes” or “it doesn’t look so bad, if you have been doing it for so long they will find something”, and other pearls that I comment on in the chapter. Walking in the shoes of chronic pain.

The process has made me feel more sensitive, but at the same time it has reaffirmed a mistaken idea I had about my illness, as I only heard that I was a unique case and unlucky. Well, no, I have seen that there are thousands of patients like me, for the same reasons, or others, and who think the same way. Few people decorate life with a “yes, it can be done”, although there is everything, as I try to see all the groups of patients in Spain and abroad to see what news or treatments are being developed.

5– How do you think literature can contribute to raising awareness about chronic diseases and the importance of adequate healthcare?

I love reading, and now that I’m retired I have more time. At university, legal books and writing in my field absorbed the little energy I had left. And now, with all the time I have to read more, I have seen that literature is missing out on this subject, on pain as an illness outside of the most academic or scientific fields, so imagine if it can raise awareness…

6 – What advice would you give to other people who suffer from chronic pain and are looking for a way to express their experience through writing?

They should do it, because as I have said more than once, it is therapeutic, and all the testimonies are helpful, but they should do it without pressure, out of simple desire. In fact, I have two good friends who are working on two projects, and I hope that their books will be published soon or when they can, one related to art and pain, and another with everyday situations and fantastic illustrations. Another topic that we all know is that it is very difficult to publish or be published on a topic like pain, because it does not sell. It is like that and I knew it, although I tried.

7- What do you think your readers will like most about you? My Red October?

Perhaps the originality of the story, an experience of pain that is very different from my story, is my own. Doris Lessing pointed out that stories will recreate us when we are broken, hurt, even destroyed, but will they last?

This book, as I indicate in the index, can be read in doses that maintain a certain independence and with various messages: to communicate, to raise awareness, to understand, to free and to bring feelings closer. I remember a reader who told me that it seemed to her a literary medicine, to which she would add to cleanse the wounds and to strip the pain of the invisibility that covers it. Because for her patients, incomprehension is so often what hurts us the most.

Pau Donés said that it is urgent to live, to which I add: to listen and do so with dignity.