Sara Staggs's Blog, page 2

What to expect in the epilepsy monitoring unit

Looking over my blog, I can’t believe I haven’t written about this yet! I’ve been in the EMU three times at two different Level 4 Epilepsy Centers, and the experience is pretty much the same - different views from the windows, sometimes easier to have seizures, but overall if you’ve seen one Level 4 EMU, you’ve seen them all. For those of you scheduled to head down those halls, here is what to expect.

1. You will be monitored 24/7. From the moment you are hooked up with electrodes to your head and assigned a bed, you are on camera and your brainwaves are being constantly recorded. The camera does not have sound, but it is focused on your bed. I have no idea who is watching it or where they are, but someone is somewhere. Your brainwaves are being monitored through the 24-hour EEG as well. Generally, there is a “seizure button” of some kind, which you or your visitor press when you have an aura or are having a seizure, but if you start having one without pressing the button, all the nurses and doctors on the floor will know anyway because of the video and EEG monitoring, and can come and help you.

2. You can’t get out of bed without asking and having a nurse or someone else with you. Need to go to the bathroom? Press that nurse’s button, get ready to wait a few minutes, and then have a clumsy trip across the room, while trying to move without messing up your electrodes and all the wires attached. You won’t be able to walk around the room - it’s hard for the camera to track, messes with the EEG, and because of what you’re about to learn in #3, it’s dangerous. In one of the epilepsy centers, I was taken for a “walk” once a day. Literally, the nurse came in, said, “Okay, Sara, time for your walk,” and we went up and down the hallway twice. It was one of the best parts of my day.

3. You will be there until the doctors have the information they need or you say you want out. When I hear people say, “I’m scheduled to be in the EMU for X number of days” I hate to burst their bubble, but you can’t really do that. The point of the EMU is to figure out where your seizures are coming from and, to do that, you need to have more than one seizure. They will try to provoke a seizure by taking you off your meds, keeping you awake overnight, doing whatever they can, but even if they take you off your meds completely, you may not have seizures as quickly as you expect. I was in the EMU for 10 days (that’s a LONNNGGGG time) because I wasn’t having seizures when I was in there - even though I was on a quarter of my normal dose of medication and was staying up all night, every night. Adequate sleep is not encouraged in the EMU. Seizures are. You probably won’t leave unless you’ve had at least two, so the department has something to talk about. If your two seizures are completely different, then you’ll need to have at least one more. So, you’re actually scheduled to be in the EMU “until I have enough seizures that the doctors can use the information to make decisions about how to treat my epilepsy.”

4. Expect a lot of down time - and pack accordingly. One thing I never thought about until I got to my first EMU was that I wouldn’t be having seizures all of the time, or even most of the time. I also didn’t realize the toll that not being on my meds and not sleeping would take on my mental capabilities. I packed all these fun books, travel Scrabble, a pack of cards, my laptop, and an adult coloring book. By night three, all I could deal with was my laptop and the coloring book. You can pack books, but I’d stick with simple ones. The EMU is more of a place to binge-watch that Netflix series you’ve been meaning to catch up on.

5. You won’t be able to shower/bathe. The most you can do is a daily wipe-down in the bathroom. I’d suggest bringing at least two sets of your own pajamas that button up the front. I did that every time, and having a fresh set to change into was a nice way to feel cleaner than I actually was. Don’t bring anything that you have to pull over your head - your scalp will be covered with electrodes. Button-up PJs. Matching top and bottoms are a plus. :-)

6. It’s not forever. There will probably be times in the middle of the night or after a seizure when you think “This sucks.” or “I wish I was somewhere else.” You are not the only person in the EMU having that thought, and even though your stay may be longer than initially planned, it will end. You can make it through.

Being in the EMU wasn’t great, but the information that came from those stays drastically changed my life for the better. Whether you end up staying for three days or three weeks, there’s an end in sight and the goal is to get as much information about your brain as possible while you’re in there. So, buy some button-up PJs, bring your tablet/laptop/phone, and get ready to feel really off while being watched 24-hours a day by someone you may never see.

5 ways you know you are ready to query your manuscript

Writing a manuscript can be a long process. Some days you feel like you are on top of the world - you put down a solid 5,000 words, things are great; the next day, you are almost in tears, feel stuck in the weeds of one of your secondary characters, and wonder why you ever thought this writing thing was a good idea in the first place. All you want is to be published!! But, let’s say you've past all that - you’ve completed what you consider to be your final draft. Congratulations! The next step is to start querying agents or publishers. But how do you know when your manuscript is ready to be sent out into the querying trenches? Read on to learn from someone who has been there before, and had to learn a LOT very quickly.

1. You've completed multiple rounds of revisions.

Writing is a process, and the first draft is rarely the final one. You should have gone through at least a few rounds of revisions, including self-editing, beta-reader feedback, and (hopefully) professional editing. Make sure that you've refined your prose, tightened up the plot, and ensured that there are no major plot holes or inconsistencies. If you’ve done all the above, and feel like you've done everything you can to make your manuscript the best it can be, it's probably time to query.

2. You've received positive feedback from beta readers.

Beta readers are a crucial part of the writing process. These are people who read your manuscript before you start querying and give you feedback on things like plot, pacing, character development, and more. If you've received positive feedback from multiple beta readers, that's a good sign that your manuscript is ready to query. Of course, not everyone will love your book, but if you've received consistent feedback that your book is engaging, well-written, and enjoyable, that’s a good sign.

3. You've researched agents and/or publishers who represent your ‘type’ of book and who are accepting submissions.

Before you start querying, you should have a good idea of the agents or publishers you want to work with. There’s no use querying an agent who only represents YA when you have a 150,000 word science fiction novel. Research their submission guidelines, what kind of books they represent, and what their preferences are. (MSWL - short for manuscript wish list - is great for this.) This will help you tailor your query letters to each individual agent or publisher and increase your chances of getting asked for a partial manuscript, a full, or just landing an agent quickly. You should also note if they are currently accepting submissions. I kept a color-coded spreadsheet when I was querying that had agent names, dates of my query, response time/response, and noted if the agent was not accepting queries at the moment, but would later. Do your homework, and your query process will likely be shorter and more successful.

4. You're prepared to handle rejection.

Rejection is a part of the publishing process, and it's important to be mentally prepared for it. If you're afraid of rejection or feel like you'll be devastated if your book is rejected, you may not be ready to start querying. However, if you're prepared to handle rejection and understand that it's a normal part of the process, then go ahead. Maybe you’ll be one of those lucky people on Twitter who type “OMG - Got an agent my first week of querying! #blessed #agent” More likely, you’ll need to develop some thick skin. And you will.

5. You have a solid query letter and synopsis.

Your query letter and synopsis are your first impression with agents and publishers, so they need to be strong. If you've written a compelling query letter and synopsis that accurately convey the theme/message of your book and make it stand out from the crowd, you’re already ahead of the curve.

Truly knowing when your manuscript is ready to query is a subjective decision. However, if you've completed multiple rounds of revisions, received positive feedback from beta readers, researched your agents and/or publishers, are prepared to handle rejection, and have a solid query letter and synopsis, then go ahead. Good luck!

How ChatGPT recommends people with epilepsy handle stress

I told you I was going to see what ChatGPT had to say about epilepsy, and I did. My prompt was “Write a blog post about how to handle stress when you have epilepsy.” Here’s the response. I’ll leave it for you to decide if the info is helpful, accurate, and gives you ideas on how to manage your stress!

ChatGPT Prompt: Write a blog post about how to handle stress when you have epilepsy

Living with epilepsy can be challenging, especially when it comes to managing stress. Stress is a common trigger for seizures, and it can also make living with epilepsy more difficult by increasing anxiety and depression. However, there are several strategies that you can use to help manage stress and reduce the impact it has on your life.

Practice relaxation techniques

Relaxation techniques such as deep breathing, meditation, and progressive muscle relaxation can help reduce stress and promote feelings of calmness. These techniques can also help you manage anxiety and depression, which are common emotional responses to epilepsy. Practicing relaxation techniques regularly can help reduce the likelihood of seizures and improve overall quality of life.

Exercise regularly

Regular exercise has been shown to be effective in reducing stress levels and improving overall health. Exercise also helps improve sleep, which is crucial for managing epilepsy. It is important to choose activities that are low-impact and safe, such as yoga, walking, swimming, or cycling. Always consult with your doctor before starting any exercise program.

Get enough sleep

Sleep deprivation is a known trigger for seizures, so it is important to get enough sleep. Establish a regular sleep schedule and avoid caffeine, nicotine, and alcohol before bedtime. If you have trouble sleeping, consider using relaxation techniques, such as deep breathing or meditation, to help you fall asleep.

Seek support

Living with epilepsy can be isolating, and it is important to seek support from friends, family, and healthcare professionals. Join a support group for people with epilepsy, or speak with a therapist or counselor who can help you manage stress and emotions related to epilepsy. Seeking support can also help you feel less alone and more connected to others who are going through similar experiences.

Practice self-care

Self-care is important for managing stress and maintaining overall health. Take time to engage in activities that bring you joy, such as reading, listening to music, or spending time with friends and family. Practice good self-care habits, such as eating a healthy diet, staying hydrated, and avoiding drugs and alcohol.

In conclusion, managing stress when you have epilepsy can be challenging, but it is essential for improving overall quality of life and reducing the likelihood of seizures. By practicing relaxation techniques, exercising regularly, getting enough sleep, seeking support, and practicing self-care, you can better manage stress and live a more fulfilling life with epilepsy. Remember to always consult with your doctor before making any changes to your epilepsy treatment plan

How to talk to neurologists (and get answers)

I run a support group for people with epilepsy, and one of the common themes that I hear is that when someone is newly diagnosed with epilepsy or their seizures change, their neurologist doesn’t take the time to answer their questions. Family and friends have started ‘referring’ people to me that they know with epilepsy - mostly those who are newly diagnosed or who have a child just diagnosed with epilepsy - who want answers they aren’t getting from their doctors. It can be scary hearing “You have epilepsy” for the first time. I’m not a doctor, but I’ve been in the epilepsy system long enough to know the language and to know what questions to ask. Here are some tips on how to get your doctor to listen to you and give you the information that you need.

1. You can - and need to - advocate for yourself. Something I hear often is that people are intimidated by their neurologists. They find their doctor dismissive, and don’t know if they can ask questions. I get it. I used to think that neurologists had all the answers, I should just listen to them, take the meds I was given, and not ask questions. Here’s the thing: neurologists don’t have all the answers, but you deserve to have yours answered. They are not better than you are. You are just as important in this world as the doctor you are seeing to take care of your brain, and you need to be your own advocate. Ask all the questions you have. Take someone with you to the appointment. Bring a list of questions, and make sure that every single one is answered before the doctor leaves the room. You can also tell your doctor how you are feeling about your experience with him/her/them. “I don’t feel like you are listening to me” is completely appropriate to say if that is the case.

2. Ask all your questions. As I said above, bring a list of questions that you want answered. In the moment, you may be nervous, scared, sad, and forget to ask something. Prepare for your appointment, and don’t expect that the doctor will be. Honestly. I know that it’s strange to say, but I have heard from many people that their neurologist came into the examination room without having looked at their chart or reviewing their tests. Be prepared for that, and bring your list of questions. I have included a list below of questions that are pretty common, and your doctor should be able to answer.

3. Remember that there is more than one neurologist in the world. You don’t have to stay with the first neurologist you see if you don’t have a good experience with that person. You will be a team working to manage your seizures, and you should feel respected by your teammate. If you don’t feel comfortable with your first neurologist or you don’t think that he/she/they are listening to you, have your PCP find someone else for you.

Being thrown into the epilepsy world can be scary, and the world of neurology does have its own language. Your neurologist needs to take the time to explain this language to you in a way that you understand, so take these tips from someone with decades of experience and you will feel a bit more confident walking into your appointment.

Common questions

1. What are the results of my MRI/EEG/other imaging or tests?

2. Why are you recommending this medication? Why this dose?

3. What are common side effects of this medication? How long do they last?

4. Will we need to check my levels? (This means draw blood and have the doctor see what ‘level’ of medication is in your system - is it enough? Too much?) How often? How do I schedule that? Do I need to do it at a certain time?

5. What type of seizures do you think I’m having? Why do you think that?

6. Why are you recommending this next test/imaging/etc.? What information will it provide that we need?

7. I’ve tried two medications (or more)/I have an abnormal MRI. Is my case one where we can look at surgical options? Why/why not?

8. What surgical options are available? (For those who have tried two or more medications or who have abnormal MRIs/other imaging.)

9. What testing would we need to do to determine if I am a candidate for surgery? Why do we need to do these tests?

For trying new medication or a new dose of medication:

1. How long do I need to give this medication to work?

2. When will I know if any side effects will go away?

3. How long should I wait to see if the side effects go away?

4. If the side effects are too much (i.e. debilitating headaches, blurred vision, extreme drowsiness), how can I contact you to let you know? What will you do about it?

Epilepsy & Exercise

Getting exercise is important for everyone, and if you are a person with epilepsy - especially uncontrolled seizures - you may feel like there are no options for you to really move your body. As a person who has found that - pre-RNS - any exercise that raised my heart rate above 130 almost guaranteed a seizure, I have first-hand knowledge on was that you can stay active and stay safe.

1. Pick a low-key activity, and do it with a friend who knows seizure first aid. I found that walking was a great way for me to get exercise. (And I have a dog, so that was motivation.) I also found that it is a good way to socialize because people generally have 45 minutes at some point during the week/weekends to walk. It didn’t get my heart rate up too high, and if I felt that my friend was walking too fast, I just said, “Can we slow down a bit?” I found myself looking forward to my weekly scheduled walks with different friends. Epilepsy can be isolating, and even if I couldn’t join my buddies on their 5am run, I could get one to come during her lunch break for a brisk (or not so brisk) neighborhood walk.

2. You do have to know your limits. And accept them. I knew my limits when it came to exercise, and it took me a while to accept them, which meant that I had a seizure when I told a friend that, “Of course, I can do hot yoga! I love hot yoga!” Overheating is a trigger for me. I knew that. But, I wanted to be ‘normal’ so much that I would risk having a tonic-clonic seizure in the middle of the yoga class rather than tell this person that I couldn’t go. Two brain surgeries and about a decade of maturing later, I just cringe at that story. So, know your limits, and just work within them.

3. Take precautions when doing a riskier sport. I don’t SCUBA dive. I snorkel, but I can just imagine having a seizure however-many-meters below the surface and dying. It’s not for me. I do snowboard. Going up the chairlift, I always put the safety bar down, and I always ride with my husband, and I always have my rescue meds on me. I’ll go on a trail ride with others people and rescue meds, and I cancelled a 7-day trip white water rafting trip last summer because I wasn’t sure I’d be able to keep my heart rate down to where it needed to be at that point, get enough sleep every night, not be stressed about having a seizure the whole time. So, just be careful. Everyone needs different precautions - some people with epilepsy need more than others - so do get that fresh air, but be careful.

3 Must-Reads During Trans Rights Readathon

March 20 - 27 is Trans Rights Readathon! The goal is to read as many books written by trans authors and/or centering around trans narratives in one week. Even for those of us who knew about it the whole time (me, for example), probably didn’t get through more than one, but if you didn’t know about it, it’s never too late to support the trans community! (Especially with all these book bans going on…Oh - but that’s a different blog post!)

Here are three Must Reads written by trans authors that will be around even after March 27th!

1. The Thirty Names of Night by Zeyn Joukhadar. This amazing book centers around a closeted Syrian American trans boy who lost his mother in a mysterious fire five years ago. He loves to paint, but as his mother’s ghost seems to visit him, he can’t - except when he slips out at night to paint beautiful murals around the Little Syria neighborhood in Manhattan. One evening, he finds the tattered journal of a Syrian American artist named Laila Z., a woman who seems to be intertwined with his family’s past in ways he never expected. With a touch of magical realism, and a deep dive into what it means to be who you really are - within yourself and your family - this award-winning novel should definitely be on every shelf!

2. Felix Ever After by Calden Kallendar. Like YA? I do! Felix is a trans teen who goes to an art-centered high school in NYC. He is struggling with his summer program, trying to figure out how to get a scholarship to Brown instead of the cocky, preppy white kid who (Felix has to admit) seems to have never-ending talent. But, when Felix walks into his school one morning to find pictures of his pre-transitioned self plastered all over the lobby exhibit area, all bearing his dead name, he is transformed into a teen on a mission: he thinks he knows who the culprit is - his arch nemesis and biggest competitor - but how can he prove it? It’s a touching YA novel, with the ups and downs, misunderstandings and missteps, that we all experience and can relate to long after we grow past being a YA. One of my favorite books this year!

3. Gender Queer: A Memoir by Maia Kobabe. TBH, I haven’t read this one, but I love graphic novels for adults! This is next on my TBR list, and will be my second Trans Rights Readathon book this week.

Don’t have time to read this week, but still want to support Trans Rights? Here are some places below to donate - just give the amount you would spend on a paperback and you’ve done it!

Resources

Tony’s Place: Houston-based shelter for LGBTQ+ youth

Montrose Center: Houston LGBTQ+ community center

Q Center: The largest LGBTQ+ center in the Pacific Northwest

The Trevor Project: Providing mental health support 24/7 and many more programs for LGBTQ+ youth!

Shondaland: Gives a list of 24 LGBTQ+ organizations that you can help ranging from The Human Rights Campaign to The National Center for Transgender Equality and more!

The Ripple Effect of Book Bans - and What You Can Do To Stop It

Last month, a book about Afro-Puerto Rican baseball legend Robert Clemente was removed from the bookshelves in Duval County Florida - which includes Jacksonville - “for review.” It was one of more than a million titles the Duval County School District removed, with the excuse that it is adhering to Florida’s laws restricting lessons about race, racism, gender and sexual identity. The book was “under review” because it contained references to the racist treatment Clemente experienced.

After “being reviewed,” the district decided it approved the book, and it was put back on the shelves. However, the Duval County School District will continue this intense scrutiny to comply with the 2022 Florida law, HB 1467, which requires school boards to adopt procedures that provide for the “regular removal or discontinuance” of books from schools and libraries addressing race, racism, gender and sexual identity. If teachers in Florida use unapproved books in any classroom, regardless of the age of the student, or discuss sexual or gender identity with K-3 students, they risk losing their jobs and/or their teaching license, as well as face “the other penalties provided by law.”

Florida isn’t the only state to ban books that focus on racism, LGBTQ+ issues, and books that teach concepts such as critical race theory, but it has been one of the loudest, and most specific and far-reaching into the classroom - teachers may not teach critical race theory. Under the “Stop W.O.K.E.” Act (Stop Wrongs to Our Kids and Employees Act), passed in 2022, teachers may not teach any lessons or discussions that would make students feel “guilt or anguish” for past actions committed by their race. (Read: don’t make white kids aware of the history of racism and how it persists in this country.) As of yesterday, the law was blocked by a federal judge. We will see how it plays out in the U.S. Supreme Court, where it is undoubtedly headed.

Clemente’s book is only one of the 2,532 instances of individual books being banned across Florida, affecting 1,648 unique titles. These titles are by 1,261 different authors, 290 illustrators, and 18 translators, according to a recent PEN report. This impacts the world of over 1,500 people - many of the authors minorities in religion or part of the LGBTQ+ community.

The Ripple Effect

As if banning the ability to teach today’s youth to look back on how our country’s white citizens have treated People of Color through the ages wasn’t enough, books referring to LGBTQ+ characters - especially transgender kids - have been labeled by the governor as “pornography.” In a video played by DeSantis last week at a press conference, everything from sex education books to a trans child’s memoir to collections of poetry qualified as 'pornography’, and all were accused of pushing an agenda on children. The exact agenda has yet to be identified.

However, the “Don’t Say Gay” law (officially the Parental Rights in Education law, HB 1557) already restricts classroom discussion about gender identity and sexual orientation without any exception. Lord help these children if they should understand what nonbinary means or why Billy has two dads. As my 8-year-old transgender son shows in his circle of friends, who have all seen him transition, second graders are much too young to comprehend the idea of a trans kid in their class. (Please pick up on my sarcasm.)

Beyond a view of any LGBTQ+ book and all sex ed materials as pornography, and the suppression of our racist past and present as learning that could hurt white kids’ feelings, DeSantis is removing books that examine or discuss (therefore educate) children about minority religions: most commonly Muslims and Jews. A Holocaust-themed Jodi Picoult novel was removed from a high school in Martin County in southeast Florida. Even books just written by Jewish authors whether or not Holocaust or Jewish-themed have been removed: Judy Blume’s coming-of-age novel “Forever” was removed from Sugarloaf School with the school citing that it was too promiscuous and sexual. “Extremely Loud and Extremely Close” by Jonathan Safran For was removed from a Florida school district library. (Guess I won’t be doing a book tour in Florida. Where would my Jewish self read a book that includes secondary characters of color? Maybe Disney World? Epcot?) A children’s library removed the picture book under this “Stop W.O.K.E.” Act that depicted Jews observing Shabbat, and one about a Jewish family with two dads. (That last one is a double whammy. Two issues in one book! That’s really something.")

To put it in quick numbers from the 2021-2022 school year:

41% of books banned have LGTBQ+ themes, protagonists, or prominent secondary characters.

40% have protagonists or prominent secondary characters who are POC.

22% include sexual content.

21% are titles that deal with issues of race and racism.

9% are autobiographies, biographies or memoirs.

4% are stories with religious minorities.

These numbers are only from data collected between July 1, 2021 - July 30, 2022. At least 139 additional bans have taken place from July 2022 - today.

What You Can Do

1. Fight fire with fire: speak out. Exercise those First Amendment rights. Jodi Picoult (who had 20 of her own novels removed from Florida school district libraries for reasons ranging from “pornography” to, I guess, talking about the Holocaust? Is that a reason?), and James Patterson are leading the charge in leveraging their platforms and status as best-selling, nationally recognized authors to speak out against the book ban. We are fighting a powerful political agenda that leads to educational gag orders and teachers who are unsure what books are allowed, and afraid that they will be punished legally and professionally if they use certain words in the classroom. We are also fighting well-off right-wing nonprofits, such as Moms for Liberty, which now has over 200 chapters.

These people - and all book ban supporters - are loud and proud. We need to be just as loud as they are. If you live in a book banned state, contact your representative, senator, governor, and make them listen. Start a grassroots campaign. Politicians listen to the loudest voices, and the majority, even if they don’t agree with them. You see, people ultimately have the power because if we don’t vote for the politician, they are out of a job.

PEN American has a great tip sheet for students, authors, and librarians on how to protest. Under the National Coalitiation Against Censorship “Resources” tab, there is a plethora of information on book bans - from how to advocate for books, to practical resource for students to use when combating book bans and educational gags. There’s a sheet that explains what you can and can’t do - helpful for parents too - and what your First Amendment rights cover and what behavior falls outside of First Amendment protection. This will help you all protest safely.

2. Raise money for politicians who do not support books bans, or just donate to their campaign. Then VOTE. Besides media noise, celebrity support, social media Tweets or videos going viral, hashtags, and (depending on the issue and what side you are on) the somewhat-useful cancel culture, money really talks. Money makes a difference. Every dollar counts - give $1, $2, $5, whatever you can afford - because the politicians leading the charge for book bans have deep pockets. Let’s give to their opponents, line their pockets, and then vote. VOTE, VOTE, VOTE.

3. Book bans hurt our kids. They suppress teachers who want to teach about the actual past of our country, a truth that has been ignored for too long. I have a cis-white 10-year-old boy, and he learned the real relationship between the Native Americans and the pilgrims - later the settlers and the U.S. government. He learned the history of slavery, and how racism persists until today, and he is fully aware of LGBTQIA+ issues. He learned these things in school. From his teachers. Does he feel “anguish or guilt” (in DeSantis terms) about being a straight, white kid? No. But, it was a great way to address white privilege, which he would not have realized existsted without his wonderful teachers. This lesson was a great way for our family to talk about what we, as white people, can do for people of color, what we need to do, and how the experience of the Black kid in his class is probably completely different from his. He’s not scarred. He’s not sad. He’s educated.

School should be one of the safest and most accurate places to learn about racism, LGBTQ+ issues, issues faced by people of color, minority religions, and minorities in general. Taking the books away that address these issues hurts everyone: it denies minorities a voice, and denies white Christian cisgender kids from learning about differences in people.

So, please, speak up against book bans. Be loud. Give money - whatever you can - to politicians and organizations that oppose book bans and educational gags. Give time.

Students, do it for yourselves.

Parents, do it for your kids.

Everyone, do it for your country.

Why Book Reviews Matter

Why are newer authors always asking for the reader to review their books after they read them? What’s the big deal about putting reviews on GoodReads or Amazon and/or your social media account? (But, especially GoodReads and Amazon!) Read on and find out.

1. Book reviews help authors get more visibility. I don’t know how Amazon’s algorithm works. I don’t know how GoodReads does either. But I do know that a book with more book reviews - especially positive book reviews - rank higher on both websites than books without book reviews or with poor book reviews. The higher a book ranks, either overall or in its genre, the more people that will see it, the more people who will possibly buy it. If people don’t know that a book is out there, they won’t buy it. Professional publicity can only take you so far. We count on readers to post reviews - even if it’s just how many stars - to boost sales.

2. Books with a lot of book reviews peak interest in readers. Similar to above, but a little different. Everyone wants to be part of the popular group, and in the reading world that means that everyone wants to read what others are reading. Book clubs, readers of a particular genre, everyone in general wants to read a book that everyone else is reading, and the only way to tell if everyone else is reading it is to either see it splashed across the top of every page of every website in expensive ads or to see that the book has 100, 200, 1,000+ book reviews. Debut novelists need this boost, and it’s hard to break into the popular group if readers don’t leave reviews to peak other readers’ interest.

3. Book reviews help readers too! Book reviews don’t only help the author; they help the reader too! If you’re looking to buy a book, you want to know if other people have enjoyed it. You’re not likely to buy a book without any reviews - especially if you haven’t heard of the author. But, if the book has a lot of positive reviews, you might give it a try. Buying a book is an “investment” of sorts, and book reviews can help you decide if the book is for you or not.

Please leave reviews for books that you buy, even from well-known authors. The review doesn’t have to be long - just give it a star rating - but reviews matter more than most people know, so go on Amazon, GoodReads, BookBub, your social media accounts, take a minute, and let others know if you enjoyed it or not.

How to Keep Going #EpilepsyMentalHealth

We can all agree that having a seizure disorder sucks. No one wants it. Even if you are seizure-free with meds or after a surgery, it’s still somewhere in the back of your mind. If you’re not seizure-free, even with meds and after a surgery, it’s a little closer to the front. And whether you’re on a good streak and then a seizure comes, or you are having seizures day after day, it can be hard to keep going, to get up off the floor (sometimes literally) and remember that you are bigger than your seizures. But, you are.

Anxiety and depression are really common mental health issues when you have epilepsy, and for good reason. Here are some tips that I have found help me keep going, day after day, even when a seizure comes. These tips have helped me get off the floor, and kept me here.

1. Remember that there is always something to live for. Maybe you have kids. They need you. Maybe you have a partner. They need you. Maybe you have a cat. Your cat needs you. Do you have friends? Even just one friend? That person needs you around. I’m not asking you to get out of bed or get showered or dressed. I’m asking you to just stick around for one more day. Day by day. There is always something to live for.

2. Keep a journal. Write down your feelings. Draw in it. However you best express yourself, a journal can help you get those feelings somewhere tangible. I don’t mean that you have to get a fancy, handmade leather-bound one - you can just use a sprial notebook - but having something to write in or draw in when you are feeling your big feelings is good.

3. Call someone. I have called my best friend while sobbing and stayed on the phone with her while she drove to my house. I was a hot mess, and she stayed with me and talked me off a ledge - made me some tea and listened while I ranted and raved about how unfair life was. And, life’s not fair - let’s just get that out there right now. If it was fair, there would not be epilepsy. But, having someone to call who will be there for you in your lowest moments can be a life saver.

4. Remember that science is not going backwards. I’m 43. I’ve had epilepsy for about 43 years. When I was first diagnosed, there were maybe three or four epilepsy meds. Now there are more than thirty. There was no such thing as SEEG monitoring when I was a baby; no laser ablation; no RNS. Now, not only are there so many more options, but more and more are coming. I’m holding out hope that one day, something will make me completely seizure-free - maybe a new med, a new way of mapping to get actual firm margins, a new surgical technique. It might be coming, so I’m staying hopeful.

I have so many other tips: get outside (exercise = less depression), always have rescue meds near (reduces anxiety when you know that you can help yourself), watch a funny movie, find a support group (I lead one every other Wednesday!), take deep breaths, just do something - anything - that you enjoy doing.

Stay with me, folks. I’m going to keep this blog going, so wait until you see what I write next week!

What is a responsive neurostimulator? (A.K.A. the computer in my head)

“My mommy has a computer in her head,” I heard my oldest son brag to his friends. As I think this gave him some street cred, I didn’t correct him. Two years later, I think they still believe I’m some sort of cyborg because I catch them giving me suspicious looks every once in awhile.

I don’t have a computer in my head. I have a responsive neurostimulator - more commonly known as an RNS. It’s one of a few devices out there that helps treat drug-resistant seizures (seizures that aren’t controlled by medication). There’s the vagus nerve stimulator, deep brain stimulation, and the RNS. I might be missing a few, but those are the big three. And, seeing I just ran a mile last week - something I haven’t been able to do without having a seizure for over a decade - I think the RNS deserves a little attention.

1. What is an RNS? The RNS is a medical device that constantly monitors your brainwaves. Think of it as a pacemaker for the brain. It has two leads - little wires with electrodes at the end - that the doctor will place at the seizure focus or foci to monitor your brain waves at that site. The medical device itself is smaller than a phone, curved, very light, and lays flush with your skull. No one can tell that you have anything there. The device and leads are constantly monitoring your brain waves - it’s like a never-ending EEG - but you don’t feel it or have to think about it, and it learns what normal brain waves look like for you and what abnormal electrical activity looks like. When the device senses abnormal electrical activity, the RNS sends a little pulse to interrupt the potentially seizure-building communication in your brain, and the idea is that it stops the seizures before they can begin by interrupting the seizure activity as it starts.

If you aren’t having abnormal electrical activity - or something that the RNS recognizes or thinks is abnormal - it’s quiet. The leads and device just hang out, monitor what’s going on, and wait.

2. Do you feel the pulses? No. The device can be altered by your neurologist to deliver stronger pulses, weaker pulses, pulses in different rythyms (short, short, short, or long, short, short, or long, long, short - you get the idea), but you don’t feel it when it is actively delivering pulses. And, as we aren’t have seizures all the time, it’s pretty neat that you have something in there monitoring your brain, tracking your brainwaves, but not adjusting them unless they need to be adjusted.

3. So, what’s the downside? The downside of an RNS? First of all, if your doctors don’t already have an exact location of where your seizures start, you’ll have to go through brain mapping, which means surgery and a stay in the EMU. Why? Because there is no point in placing leads if they aren’t exactly where your seizure foci are - then the RNS would never detect abnormal electrical activity, and your seizures wouldn’t improve.

Also, the device has to learn what is normal and abnormal for your brain. It’s smart, but every brain is different, so it needs time. And you and your doctor have to figure out what strength of pulse (between 1-12) works for you, and what rhythm works for your brain. Too little stimulation, and there’s no point. Wrong rhythm of pulses probably won’t help very much. Last year, a computer program was able to read the information I had downloaded, recommend the exact strength and rhythm that would be helpful, my neurologist and I tried it, and it’s actually working. (I say ‘actually’ because it took 2 years for me to really trust that this device would hold up and make a significant change.)

Third, you have to download your brain waves almost every day with the trusty little laptop and wand that you are given, and then - not every day, but semi-frequently - transfer the data to the main system for your doctor to look at and evaluate. Not a big deal, but it takes a few minutes. My kids love watching the data transfer from my device to the laptop.

And finally, you can’t change the settings without going to see your doctor. For something this advanced where you have a laptop and the wand, you’d think that there would be a way to change through a virtual visit, but, no - not yet, at least.

I will tell you that, after meeting with my neurologist last May and getting the computer-recommended settings, my quality of life has improved dramatically. I don’t worry as much about seizures. My “big” seizures are much less frequent. It’s a pretty cool feeling. I don’t have daily auras, I feel that I can begin to trust my brain.

Takeaway: If you have failed more than 2 seizure meds, you should begin talking about other options - including surgery and devices. If your seizures start in an area that can’t be resected or the doctors can’t find the exact margins, the RNS is a good alternative and could give you the increased quality of life that we all desperately want, need, and deserve.

Resources:

Neuropace: Currently the company making the RNS. https://www.neuropace.com