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Sara Staggs was a civil rights attorney pregnant with her second child when her doctors told her to stop practicing law: her seizures had become too frequent. Staggs' 2023 novel, Uncontrollable, fictionalizes her experiences with epilepsy and explores the impact of epilepsy on emotional health, relationships, and families. She talked with Dr. Alina Ivaniuk about her epilepsy history, her surgical evaluation experiences, and how she pivoted from attorney to author.
Sharp Waves episodes are meant for informational purposes only, and not as clinical or medical advice.
[00:00:00] Dr. Alina Ivaniuk: Hello, everyone. This is Alina from YES-ILAE bringing you another episode of Sharp Waves podcast. Today is an exceptional episode. Today's guest is Sara Staggs, an aspiring novelist whose first novel has epilepsy as a leitmotif and that's for a reason. She reflected her own epilepsy story in her writing, and I'm super excited to speak with her about her novel, about her path, and some other related things.
I'm so happy to have you today with me, Sara. Welcome, and could you please introduce yourself briefly to our listeners
[00:00:39] Sara Staggs: First of all, thank you for having me on. I'm Sara Staggs. I am a novelist. My debut novel, Uncontrollable, just came out. I used to practice law and I think we'll get into a little later why I don't anymore. I'm an epilepsy advocate. I'm an LGBTQ advocate. And I live in Portland, Oregon with my husband, my two sons, and our little goldendoodle.
[00:01:05] Dr. Alina Ivaniuk: Fantastic. That's still a busy life. And even busier with your new, recently released novel. It was very insightful to read for me because I'm a clinician and that's the patient perspective.
It tells the story of a young woman, she's successful, she's a lawyer, and her life is totally changed by epilepsy and that's essentially your story. So you're a person with epilepsy, but you're also a lawyer. And could you tell us a bit about your background in law, how you were pulled to law and how did your career go.
[00:01:41] Sara Staggs: Of course. So when I was in college, I meant to go pre-med. And I got to organic chemistry, and that same semester I was taking constitutional law, and no matter how hard I studied, I was terrible at [organic chemistry], and I was really good and really interested in constitutional law. So, I changed from pre-med to pre-law.
And ended up going to law school in Oregon and I just fell in love with civil rights litigation. So representing people who had been abused by the government-- if a policeman had used unreasonable force, let's say, on a person of color or people have been mistreated in, in jail or prison. Those were the issues that I was really interested in.
And so I practiced civil rights litigation. So I was basically a trial attorney for a good eight years and then my epilepsy got the better of me during my second pregnancy and I had to stop. I was having too many seizures and my doctors all got together and said, you have to stop practicing. I went into that meeting expecting to talk about seizure control and I left knowing that I would just have to close my practice. So it was a very, very sudden switch.
[00:03:06] Dr. Alina Ivaniuk: That's, that's dramatic. And that experience, that's something that you describe, you're hearing the main character to go through and it reflects your experience as well. And you tell about her history of her epilepsy in the book. Could you tell us about your epilepsy timeline, where it started? When did it start to interfere with your daily living, with your career, with your family?
[00:03:34] Sara Staggs: I was diagnosed with epilepsy when I was about 18 months old. My first seizure was a febrile seizure, and I assume that most people listening know what that is, but let's say you don't. It's a seizure that comes with a very high fever. It's not uncommon in infants, young children, what have you.
And just because you have one seizure does not mean that you have epilepsy. Right. So my parents took me to the ER and they were sent home. "Don't worry. It's a febrile seizure." And then a couple months later, I had a seizure that was unprovoked.
And then I was diagnosed with epilepsy and it wasn't a problem growing up. I was able to do everything. I was pretty much seizure free. And then I started puberty and I had to add, like, one more pill to my medication and then I was seizure free until I went to college and then things completely changed, and it was basically because my lifestyle completely changed.
I was under a lot of stress. I was staying up late. I joined a sorority. So I was going to parties and so my seizures came back and I was having tonic- clonic seizures. without an aura and then they weren't too bad. I could, I could work around them. I figured out how to game my brain. If I didn't have a seizure by 11 AM, then I was going to be okay for the rest of the day, is what I figured out.
And so I graduated and went on to law school and then my seizures changed. I started going to complex partial seizures with an aura. And then I was able to get through law school and I was able to practice. My seizures were not too bad. I was able to drive. And with my first pregnancy, I didn't have any seizures throughout the pregnancy until about eight and a half months, I had one.
And then with my second pregnancy, it was like we were always playing catch up. And I would have a seizure, go in, have my levels drawn, they'd increase the meds, you know, go in, increase the meds.
And so finally at about four and a half months, that's when they said, you know, litigation is too stressful. It's not good for the baby or the pregnancy. So you need to stop. And then my neurologist that I was seeing at the time retired and I was referred to a new neurologist and that was when I was told that if I didn't get my seizures under control, I would probably die before I was 50.
I had a laser ablation and that was okay. It changed my seizures a bit, but they were still there. And so I went and I had an RNS implant and my seizures are much, much better now, two years after that.
[00:06:32] Dr. Alina Ivaniuk: I'm glad to hear that your seizures are better with RNS. I'm really glad. And it has been a very long way to this point where your seizures are under apparent control, though, as far as I understand, you're not seizure free, but still, it's something that was worth fighting for. Is that right?
[00:06:54] Sara Staggs: Yes, definitely. The ablation interrupted the network, but didn't, you know, the seizures kept coming. And so when I was approved as a candidate for an RNS, I was very excited and, and it seems to be really doing its job. So it was worth it.
[00:07:13] Dr. Alina Ivaniuk: I'm also very excited for you. And especially in that, you know, initial context when your physician told you that you are going to die. If you don't take your seizures under control. Just, I just wonder about that, the feelings that you had when you were told that you are going to die, how did it feel and for me as a clinician, it sounds not like a very good way to present the information to the patient. Was it also your perspective back then?
[00:07:45] Sara Staggs: Well, it was a new neurologist and he did not have the best bedside manner. So he walked in and he just sat down on the swivel chair and didn't even look at me or introduce himself. And so I just sat there and looked at him. And finally he looked up from the computer and told me, “I've reviewed your charts and I'm very concerned.” And then came out with the sentence about SUDEP and if you don't get them under control, you will likely die before you're 50. And at the time I'm 36. So 50 doesn't seem that far away.
At first I was shocked. And then he said, “Have you ever thought about surgery?” And I had been evaluated by some doctors in Portland and they had determined I was not a surgical candidate about three years before this meeting.
And so I then was very angry. I said, “I thought you looked at my chart. I was evaluated and they said no.” And he said, "Well, I don't think they had enough information."
It wasn't a fantastic meeting. He's still not a fantastic neurologist. But, you know, it ended up working out.
[00:09:00] Dr. Alina Ivaniuk: Well, I'm glad that it worked out. And I'm glad that you were not frightened of that and that you kept pushing forward and searching for some options, and you underwent that that pathway and another thing that you described pretty vividly in your novel. And I guess it was your experience as well, is the EMU stay, stay in the epilepsy monitoring unit, that pre surgical evaluation. Could you share that experience with us?
[00:09:33] Sara Staggs: So for the first stage, the regular EEG, I never thought about the fact that I wouldn't be having seizures all the time. That didn't really cross my mind.
And. I was not prepared for the loneliness that I felt when there wasn't anyone there. There was a lot of downtime and I did have friends and family come and stay with me during the day, but they would go back to the hotel at night. And, and that was when it was sort of, it was very lonely. Because I was trying to keep myself up to not sleep so that I would have a seizure, and you know, the EMU can be a very lonely place, very uncomfortable, people are coming to check on you, they can touch you all the time, whatever, and it's just not, it's not a great experience, but at the end, you know, you hopefully get some answers, because there's a reason you're there.
The biggest challenge for being in the non-invasive part of the EMU stay was probably the emotional challenge.
[00:10:47] Dr. Alina Ivaniuk: Emotional challenge. And what about invasive evaluation? Did it follow in your case back-to-back with non-invasive? Was there a gap? And how, how did you feel about the invasive part?
[00:10:58] Sara Staggs: They let me out of the EMU for about two days before I had the sEEG implants, electrode implants, and they did 15. I did not know that they were going to shave half my head until I was being wheeled down to the OR. So that would have been something that could have been communicated a little earlier. You know, I would not have said no, but it would have been nice to be a little more prepared for that.
And then I didn't understand what it meant to find your motor area or find your speech area. So when things were happening, such as an electrode was stimulated in an area that is in the motor area, and my arm lifted by itself, that was very frightening because I didn't know what was happening.
So I do wish that that had been explained more at a layperson level, because I know that the neurologists thought that they did a good job and they didn't mean to withhold information. I just didn't understand two things. One, what any of it meant, and then two, that these side effects or, you know, the results of the stimulation were temporary. So when they got to the speech area and I couldn't talk, it was very, very frightening because I didn't know what was permanent, what was not, and so I was very, very scared.
And so I guess my recommendation would just be to explain a little more about what it means to "find your motor skills area," to "find your speech area" and then to make sure that the patients understand that what happens during that stimulation is temporary, say it'll last, you know, 15 seconds or whatever it is.
[00:12:57] Dr. Alina Ivaniuk: You see, probably that's the issue with how physicians are used to it, to do it routinely. They often do this and they probably imply that you understand something because they understand something. And this is something that we should account for every time. Make sure that you go over all aspects, and probably, I'm not sure if it will be helpful for everyone but imagining yourself in the place of a patient, and what would you like to know before starting the procedure, thinking about this, when you communicate with the patient about what is coming up, that's something that I took away myself when I was reading that chapter in the book, because you described that stimulation part also very colorfully what happened .
Thank you so much for sharing that. That's very insightful. What were the options that were offered to you after the noninvasive phase and invasive phase?
[00:14:01] Sara Staggs: The recommendation or the options were do nothing, or a laser ablation, because in the imaging my brain looks normal.
So they couldn't get margins for a resection. So a resection was not recommended. And so, yeah, it was do nothing or get a laser ablation and the department evidently was split 50/50 on whether I should do nothing or get the laser ablation. But the doctors and the fellow who had been working on my case all suggested that I get a laser ablation. So I did.
[00:14:45] Dr. Alina Ivaniuk: Yeah. And how did it work? Or rather, we now know that it didn't work in the way you would love it to work in the perfect world. So it did decrease the seizure frequency or it did alleviate the seizures to a certain extent, but it didn't work out fully. And now we also know that you have your RNS.
And how did that happen? And did you have to undergo evaluation again, or they could just do it with the data that you had from your previous evaluation?
[00:15:17] Sara Staggs: I did have to undergo brain mapping again.
They implanted a subdural grid and so that had, gosh, I don't even know how many electrodes, but many, many more. Because it's important to put the leads for the RNS exactly where the epileptic activity is coming from. Otherwise, what's the point, right? It's not going to pick up any abnormal electrical activity.
Even though that was a much more invasive surgery and, you know, a painful recovery, I was more involved in the brain mapping and because I'd had it done before, I knew what questions to ask, and I was able to follow along on the laptop. They were showing me, "Okay, well, we're going over here. Now we're going over here and you know, this is your speech area." So I found that being involved and having that knowledge made it much easier. Mentally, not physically, but mentally it made it much easier to undergo brain mapping again.
[00:16:23] Dr. Alina Ivaniuk: I'm glad that it was a better experience for you and that it ended up with a feasible option for you and you got it and seemingly does help and we know that with those kinds of stimulations, usually the effect improves over time.
So, fingers crossed. Thank you so much for sharing your experience with us.
Now let's switch to another aspect of your life: your writing. I wonder how, why, and when did you decide to start writing? How, how did the whole writing story start?
[00:16:57] Sara Staggs: For years, you know, I was in a very difficult place mentally. And so I'd kept a journal in both hospitals and I just started writing what I had gone through, you know, from my journal to kind of get all those memories out of my head. And so I just started writing as therapy.
I looked at what I'd written and I thought, well, what if I make some fictional characters, fictional backstories and knit them together with the medical scenes. Maybe this could be a novel.
I had a friend who said, "I'm taking a writing workshop because I'm going to write a novel. Why don't you try it with me?" And so I started taking workshops and writing and then three years later it's a published book.
[00:17:47] Dr. Alina Ivaniuk: What are the main challenges of writing the novel? Was it a full-time commitment, part time commitment? How did you go through this and did you struggle with anything?
[00:17:55] Sara Staggs: I started the writing with workshops and it was during the pandemic. So my son was being homeschooled. I mean, not homeschooled, but he was on Zoom and my younger son was back at um, preschool masked. My older son, Max, was in first grade. So that's when I first started writing.
I started writing for a couple hours and then when Max went back to school in person in the spring, I had time to sit more and make more of a writing schedule and so I would walk the dog and then I would come back and then from nine till noon was when I would write and then I'd go on with the day, and then it got to be nine to one and then I would go on with the day and the kids would come home at about three.
It really takes sitting down and writing. That's what you have to do. If you want to get a novel out there, you have to write the book. So you have to make time to write. And some people have jobs outside the home. And so they have to put in a few hours here, a few hours there.
And I was lucky enough to have time to myself to make it my job.
[00:19:15] Dr. Alina Ivaniuk: So it's more about consistency and discipline rather than about inspiration, right?
[00:19:22] Sara Staggs: Yes, I would say when you actually get to the writing part, you do have to make a schedule and stick to it. And then, you know, there's going to be a lot of revisions and what have you, but to get that first draft down is very important to have a schedule and, and then even the revisions because that takes a lot of writing as well.
So you almost have to make it a job or at least part of your everyday routine.
[00:19:52] Dr. Alina Ivaniuk: Was it hard to find a publisher who would take your book and get it out?
[00:19:59] Sara Staggs: The process of finding a publisher was really interesting. It was longer than I thought it would be, but I finally got two offers in the same week from two different independent publishers. And so I took the one with the better contract. And so it did take me quite a few months and I, you know, had to grow some thick skin when it came to getting responses. But at the end of the day, I ended up with a great publisher and here's the book.
[00:20:36] Dr. Alina Ivaniuk: Fantastic. For all our listeners, the book is Uncontrollable by Sara Staggs, and you can find it on Amazon too.
Take a look and get the book and read the book, especially if you are a physician, especially if you are taking care of people with epilepsy. But also if you don't, it's a very good book to read and I highly recommend it.
Question here about physicians. Did you consult with physicians when you were writing or was it based purely on your recollections and your experience?
Because you, you use. medical terminology there. And I just wondered, did you have to get somebody's opinion on how to better use the terms? Or was it everything that you learned throughout your epilepsy journey?
[00:21:21] Sara Staggs: Yeah, I didn't have to consult with anyone. I already knew all the terms and I remembered the experiences and I knew how things went. So I have been, you know, dealing with active seizures for about, Oh, I don't know, 20 years now, maybe a little over. So I'm pretty familiar with the terms of neurology, because it is its own language, isn't it?
And so I didn't have to consult with any physicians. That's, I don't know if that's good or bad.
[00:22:03] Dr. Alina Ivaniuk: Yeah. That, that was also my point. Is it good or bad? It's good that you are proficient in terminology and you understand the language, but still, I'm sorry that you had to learn it I think that for people with any disease, it's necessary to learn the language of that disease, because again, as you mentioned, you can encounter different kinds of physicians and medical personnel who will take care of you.
And sometimes they might omit some sorts of things or not fully explain them. And then you need to either rely on your knowledge or know when to ask which questions. So it's a good language to know.
Sara, another pillar probably in your life, that's family and how the diagnosis of epilepsy in a person impacts the whole little community they are living in. What is your experience first of being a wife while being a person with epilepsy and then being a mom while also having seizures and bearing the diagnosis of epilepsy? How would you describe your feelings and your experiences about that?
[00:23:19] Sara Staggs: I have been very fortunate in my marriage in that my spouse first saw my seizures when I was, we were about two weeks into dating and I had already told him that I had epilepsy and explained what to do and, how I feel after I have a seizure and, and he was very understanding and he, we've been together 20 years, so he still is very understanding and, we have a very strong marriage.
I'm very fortunate in that way because I've heard stories about people who were, you know, dumped because they had a seizure or can only date people with epilepsy. Yeah. Things like that. So that was not my experience.
And as for being a mother, it's interesting as you go through the phases of motherhood. So having a newborn, one of my triggers is sleep deprivation. We were able and fortunate enough to have the resources to hire a night nurse. She would wake me when the baby needed feeding at night, and then she would put the baby back down after I had fed, however, I had to stop breastfeeding my first at about five months, and then my second at about three months, because it just wasn't working out seizure wise. And sleep deprivation was my main trigger at that point. And so having a newborn and babies isn't really great if that's one of your triggers.
As they got older, they just got used to having a mom with epilepsy. They've never known any different. I have a blog and I interviewed each one about what is it like to have a parent with epilepsy? And I wrote a blog post about parenting with epilepsy. Because I think a big concern for parents is, what is this doing to my children? Right? Like, are my children going to be traumatized or, or something from my seizure disorder? And the kids are all right. They can roll with the punches and they are okay. They get used to seeing you have seizures. They end up knowing what to do.
But in the interview with both of my kids, they, it really doesn't affect them as much as I thought it did.
And so that was good. And I think that holds true for most kids is that if you have epilepsy as a parent. The kids get used to it. They're okay.
[00:26:00] Dr. Alina Ivaniuk: How old are the kids now?
[00:26:03] Sara Staggs: Max now is 11 and Miriam is eight and a half. Max knows what to do. Miriam knows where my rescue meds are. If Tyler's not around, they can handle it.
[00:26:16] Dr. Alina Ivaniuk: Fantastic. They realize everything and they most importantly accept everything and they are willing to help. That's great. Sara thank you so much for sharing all the aspects of your life story of your novel as well.
Is there anything else that you would like to tell first clinicians who work with people with epilepsy and for people with epilepsy themselves? Do you have any final messages?
[00:26:46] Sara Staggs: Sure, I do. I think that clinicians really do need to work on their bedside manner to understand that people in different stages of their epilepsy journey, maybe need different things, but they always need to be treated with respect. People are intimidated by the person in the white coat and don't want to rock the boat. Sometimes they don't want to ask questions. Sometimes if it's just a new diagnosis or if their seizures have changed, they don't even know what questions to ask.
So it would be helpful for the clinician to first of all, be prepared for the meeting because I have had clinicians come in and not be prepared. And then, second of all, to realize that they may see 20 patients in a day, but we only see one doctor and we will remember what you said, and we will remember how we felt and how we felt we were treated in the meeting with you.
So please be careful with your words, be respectful and be sure to answer all the questions and then that really makes a good clinician, because I've had good and bad and the good ones are the ones that have been respectful and listened to me and made me feel heard and seen.
And for the people with epilepsy, it's okay to ask questions. It's okay to be nervous in the meeting, but it's your right to have your clinician treat you with respect. You're actually a team and team members work together. And so just remember that you and your doctor are just as important in this world. You are not any less than that person in the white coat who went to medical school.
And also for people with epilepsy, don't be ashamed of it. There's nothing to be ashamed of. It's okay. I know there's a lot of stigma around it, but hopefully the book will give you a little bit of a platform, at least to talk about your epilepsy and be more comfortable talking about it in public.
[00:29:08] Dr. Alina Ivaniuk: For sure.
And again, take a look at the book, find it on Amazon, get the book, read it.
It's an awesome book. Sara, thank you so much for being with me today for sharing your story. And it was a very insightful interview. Thank you so much for everything.
[00:29:26] Sara Staggs: Thank you for having me. I've had a lot of fun.
Founded in 1909, the International League Against Epilepsy (ILAE) is a global organization with more than 125 national chapters.
Through promoting research, education and training to improve the diagnosis, treatment and prevention of the disease, ILAE is working toward a world where no person’s life is limited by epilepsy.