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Join Ana María Caballero, a poet, artist, and author. Ana María delves into her book, A Petit Mal, and we delve into an unexpected encounter in the emergency room, with Ana María shedding light on both the medical and emotional dimensions of her narrative.

Ana María Caballero is a poet, artist, and author.

She discusses her book, A Petit Mal.

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Transcript

Kevin Pho: Hi, and welcome to the show. Subscribe at KevinMD.com/podcast, get CME for this episode by clicking on the CME link in the show notes. Today we welcome Ana María Caballero. She’s a poet, artist, and she’s the author of the book A Petit Mal, which we’re going to discuss today. Ana María, welcome to the show.

Ana María Caballero: Thank you, thank you Kevin for having me.

Kevin Pho: So we’ll talk about your book in a little bit, but first off, briefly share your story and journey.

Ana María Caballero: Sure. I am a lifelong poet. I’ve been writing ever since I was a child. I’ve published five books in both Spanish and English, and my latest book is A Petit Mal, the one we’re going to speak about. I’m also very active as a digital poet. I create digital poems that I sell as NFTs, actually, via the blockchain, and it’s something that I’m very passionate about. I consider myself an activist for this nascent genre. And I have a new book coming out next year also that I’m very excited to release.

Kevin Pho: Now, for those who aren’t familiar with digital poetry, just tell us exactly what that is.

Ana María Caballero: They’re poems that are transformed into digital files such as MP4s or JPEGs or PNGs. Most of them, if they’re video poems, they have the sound of my voice and some visuals that I usually create with artificial intelligence.

Kevin Pho: All right, and then you sell them on the NFT blockchain. And what’s the audience like there?

Ana María Caballero: It’s a really engaged and devoted audience. I sell them on both the Ethereum and Tezos blockchains, and I work with art galleries that are specialized in digital art.

Kevin Pho: All right, so we’re going to talk about your book of course, A Petit Mal. So tell us what this book is about.

Ana María Caballero: Well, this book was written as a catharsis of sorts when my son started having seizures. He was six years old and he started having seizures out of the blue, really, Kevin. And it was obviously traumatic and shocking, and our experience with the medical system was really just quite difficult. We weren’t able to not only get answers, but even to be asked questions. We didn’t even know what questions needed to be asked. And I really wanted to document that journey and our experience in trying to heal him, to help other parents going through the same.

Kevin Pho: So give us some examples and some stories about what it was like when you tried to interact with the health care system, especially in such a serious circumstance like your son’s seizures.

Ana María Caballero: Sure. Well, my son, he was a really healthy boy and very active, and so they couldn’t really associate them with a cause. But at the same time I was very shocked that nobody asked us any questions in the hospital. No one ever asked us what our son ate, if he was sleeping, if he had any traumatic experience going on. There were no questions at all. It was all about medicating him and getting us out into the world as quickly as possible and kind of closing the case on us.

And I wanted to see if we could get a second opinion and genetic testing, and I wanted to redo the MRI, and really there were just no options given to us. It was all like, here’s the medication, and if these seizures go away then we’ll know they were seizures. A doctor actually said that to me. And the medication didn’t seem like a good enough option to me without giving other things a try. I wanted to change his diet, I wanted to change his habits, I wanted to explore other options before just going for the medication route.

Kevin Pho: And you brought your son in an emergency department situation, and they just said take this. Tell us what it was like there.

Ana María Caballero: So we went to the emergency room, and he had a seizure in the emergency room, which is a good thing in a way, because the doctor quickly ordered a CT scan and they couldn’t find anything. And so we had to stay for three days, and we were in the hospital for three days with an EEG, which maps the brain waves. Then we finally did an MRI.

But at the end of the three days they said, oh yeah, we think we might have found something, and they gave me the records and they gave me the medication. And then a month later, when I had the follow-up with the pediatric neuro doctor, he said, Ana, I’m sorry to say it, but we’re reversing the results. We’re saying that the MRI was the opposite of what the record said when I left the hospital, and the EEG too.

And this really just shocked me, because we were told something and then he was reversing it, and it’s either you see it or you don’t, kind of thing. So for me it was a problem with the reading of it and the attention given to it. And then when I asked him, why are you reversing the results, he said, oh, sometimes MRI technicians want to give us something to tell the parents, because it feels like an answer. And so I just felt like it was patronizing. They didn’t trust the parents to be able to intellectually understand what was going on, and I don’t think that’s the right approach at all.

Kevin Pho: So as all this was happening, just tell me how you were feeling. You were going from one place to another, you were being told diagnoses, and then suddenly the diagnosis changed based on another read of the MRI. Just tell us about some of the thoughts that were going through your mind during this experience.

Ana María Caballero: I mean, I just knew I had to keep asking questions, and I was very committed to following my own path. I didn’t want to just take the doctor’s word and leave the clinic and that’s it, close case. I really was like on a mission to find answers, and furiously writing down everything that was happening to us.

I wanted to know what the genetic, when we finally got the genetic test done, against his advice, we got no answers about it. They’re like, oh, you don’t really need to understand any of this. And so I found somebody who would, a friend of a friend of a friend worked at the genetics lab and said, of course, let’s have coffee and I’ll explain this to you. And it was a really interesting couple of hours in which I got information about my son that I found incredibly useful as a parent and as a human even. And it’s just, there’s no time, there’s no time for questions, there’s no time to care really, there’s only time to medicate and to move on.

Kevin Pho: And did you feel that was common with this particular institution or physician? Did you talk to second, third opinions, and did you find most of your interactions with the clinicians was like that, or was it just this particular institution or clinician?

Ana María Caballero: We had a really different second opinion, which reinforced my instincts, my maternal instincts, that the doctor just wasn’t giving us any credit in any way. The second doctor said, first of all, they had done the MRI, they hadn’t followed epilepsy protocols on the MRI. And to give a six-year-old boy an MRI you need to fully sedate them, it’s not a small feat. So the experience with the second doctor was much better, much, much better.

And I’m really happy I waited to medicate, because you understand the pace of the medical world and of the insurance companies. To get a second opinion approved it took months. So when we finally went to our second opinion, months had passed by in which our son kept having seizures and I kept not medicating him. And that was a really difficult decision as a mother and as a parent, to see my son have seizures knowing that I could potentially get rid of them, right, with the medication, but refusing to do so until I understood what was going on.

And then finally when we got to the second opinion, and he once again reversed everything the doctor had said and showed us what I trusted to be an accurate reading of the MRI, he finally suggested a medication that I read up on, and it was much less toxic, a much better option, and we could give it in a very low dosage to my son. It was a very, very studied medication that I hadn’t heard of, no one had ever told me about it. So I was really happy to have waited.

Kevin Pho: Now obviously you decided to write a book to share the story. Why did you decide to do that?

Ana María Caballero: Well, I’m a writer, and that’s how I metabolize what’s going on around me, and I was writing as this was happening. I didn’t intend it to turn into a book. At first it was just me trying to understand what I was going through. I then became very committed to finishing it and putting it out in the world and getting it published. And I was fortunate that it received an award, and it was a finalist for numerous other literary prizes. So it’s not only a meditation on health and on motherhood, but also on craft, on the impossibility of capturing experiences and memory even when you’re writing things as they are happening.

Kevin Pho: So what are some of the key messages that you want readers to come away with after reading this book?

Ana María Caballero: I think if there are readers that approach the book with a medical curiosity, I think that the main message is, ask questions and trust your instincts, especially if you’re a parent. And that it’s OK to not trust sometimes what the medical profession is telling you. We also experimented with a lot of alternative treatments, and I’m really happy we did, because I think it was a combination of that plus ultimately Western science that healed our son.

I think if you’re coming at it from a motherhood aspect, with an interest in that topic, you’ll find that there is a sort of a steadiness that’s transmitted in my book, that I hope also will come across to parents going through a difficult situation of how to keep it together, basically, when things aren’t going well with the health of a child.

And I think that those that come at my book with a literary background will find that there’s a lot of experimentation and fragmentation that really tries to get at the marrow of language. And I feel that there’s a lot to be, I don’t know if learned is the right way, but experienced through my book, about what’s possible to get published, right? As writers sometimes we’re scared that if we experiment, if we do something that’s not what we’ve seen before, they won’t get published. And actually, a literary journal called Brevity that I respect very much interviewed me about this, about, how did you get this book published, because it’s so bold in its formatting. And so I would say, be bold in your writing, and don’t be afraid to not see it published.

Kevin Pho: Now, one of the things that you said earlier was the importance of asking questions. And as your story reflects, sometimes it’s very difficult to ask questions, especially in our medical institution where a lot of clinicians are pressed for time, and it’s sometimes easier for them just to say, do this or take this medication. Now for those families who may find themselves in a similar situation to yours, how can they speak up, how can they ask those questions to the medical institution, when sometimes the environment doesn’t lend itself to do so?

Ana María Caballero: I think that you usually hear, don’t go on the internet, from doctors, don’t read, don’t look. And I would say, go on the internet, ask. I mean, avoid forums, forums are just doomsday scenarios, but there are really reputable websites out there. I mean, you have one, and also the Mayo Clinic for example. There’s really great resources out there where you can find information and educate yourself in language that’s accessible, because medical language of course is also quite intimidating and off-putting at first, it’s very hard to grasp what’s being said. And so I would say, do educate yourself, and then of course go through whatever you have to go through to get a second opinion and a third opinion through your insurance company. They sometimes make it easy, sometimes they don’t. You have to have patience.

Kevin Pho: So if you were to replay this scenario in your mind again, and you were to imagine what the ideal interaction with our medical institution should be, how should that doctor, how should that medical staff have interacted with you during that situation?

Ana María Caballero: Well, I think that you shouldn’t say that you saw something in an MRI just because you want to give the parents something to grasp on to. I also think that medication right away is something that you perhaps give at least the suggestion of waiting on. In my experience it was medicate, medicate, medicate, have you medicated, have you medicated. And it was almost like they were annoyed and angry that I hadn’t. And I think that it should be acceptable to not medicate and to wait, to have answers. And I also think that doctors should have asked us questions. At the very least, how’s your son eating, is he sleeping? I think those are all sort of the minimal things that they could have done.

Kevin Pho: Another thing that you said earlier that was a theme throughout the book was a certain steadiness that you learned during this whole experience. So tell us more about that, because as I could only imagine, a lot of patients and families who traverse through our medical system, sometimes it’s very difficult to do so. So you talk about steadiness. Talk more about that.

Ana María Caballero: Well, I think that perhaps it’s because I was writing the book that I was able to get all my frustration out onto the page. But I really felt like I kept it together because I had to. And I don’t think that I would have accomplished anything, Kevin, really, if I had gotten impatient, gotten hysterical. It was all very thoughtful. I was really just thinking about what to do, asking questions to myself, going to alternative doctors, looking and reading online as much as I could, and observing on my own what was going on, and not just always taking the words of the doctors as the holy grail. And I think that that experience really showed me sort of the mettle of what I’m capable of sustaining.

Kevin Pho: We’re talking to Ana María Caballero. She’s a poet, artist, and author of the book A Petit Mal. Ana María, tell us some of your take-home messages you’d like to leave with the KevinMD audience.

Ana María Caballero: I would like to leave the audience with the message of hope and of resilience, also of experimentation. As much as my book experiments with the written form, I experimented with treatments to heal my son. There’s not a single question mark in the book, because the entire book is a question. It’s a question of, how do we heal, and how do we each find our own definition of health? And I think that we need to define those limits for ourselves. It’s not something that will come from the outside world.

Kevin Pho: Well, thank you so much for sharing your story, time, and insight, and thanks again for coming on the show.

Ana María Caballero: Thank you so much for this time. I’m very grateful.