Sara Staggs's Blog, page 3

What is a responsive neurostimulator? (A.K.A. Why I have a 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. 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. And, the mapping itself. 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

Anti-trans legislation versus what people really think

Florida has been at the forefront of passing legislation against transgender people - specifically targeting children and teens. First, HB 1557, the “Don’t Say Gay” bill, as it was popularly named, which was signed last year and blocked kindergarten through 3rd grade teachers from talking about LGBTQ+ issues or people. In a press conference, Governor DeSantis said that teaching kindergarten-aged children that they “can be whatever they want to be” was “inappropriate” for children, “especially in Florida.” The law took effect July 1, 2022.

Texas has followed suit, being very vocal in its attempts to pass over 30 bills that would eliminate rights for trans children and teens for everything from changing their assigned sex on their birth certificate to match their gender identity to their ability to obtain gender-affirming care, some going so far as to call medical intervention to avoid gender dysphoria “child abuse.” And famously, last year, Governor Abbott authorized the state’s child welfare agency to open child abuse cases against parents who let their trans children seek gender-affirming care. This authorization was blocked by the Texas Supreme Court last fall.

And, of course, just last week, the Idaho House passed a bill criminalizing gender-affirming care, making it a felony for physicians to provide puberty blockers, hormones, or other gender affirming care to patients under the age of 18. The bill now moves to the Senate for a vote.

Anti-trans bills are being introduced in Arkansas, Iowa, Kansas, Kentucky, Indiana, Wyoming, Montana, Arizona, Tennessee, North Dakota, Oklahoma, and West Virginia.

It’s like "Whack-A-Mole” out there with anti-trans legislation. PFLAG or the ACLU or another LGBTQ+ organization defeats one, and ten more pop up.

But, the thing is…. what do everyday Americans think?

Here are some numbers that might surprise you:

1. According to a 2022 poll by the LGBTQ+ advocacy group, The Trevor Project and Morning Consult, 45 percent of Texan voters support transgender minors having access to gender-affirming care.

2. A 2021 PRRI poll showed that 82% of Americans supported LGBTQ people from discrimination in jobs, housing, and public accommodations. This is a 10% rise since the 2015 PPRI poll, and includes 67% of Republicans polled.

3. A 2022 poll showed that most Florida voters were less likely to vote for a candidate who supported criminalizing gender-affirming care for trans youth. Most Florida voters (54%) felt that transgender youth should have access to gender-affirming care if supported by their parents and doctor.

Numbers that probably won’t surprise you:

Among all the ruckus about bathrooms and words that can or can’t be used, legislators seem to forget that the mental health and lives of young people is on the line. The rates of anxiety, depression, attempted suicide among trans youth is already much higher than their cis-gender peers - the numbers are staggering. The Trevor Project and Morning Consult conducted a poll this past January where 86% of the trans and non-binary youth said that recent debates among anti-trans legislation has negatively affected their mental health, and that as a result of these bills, 45% of trans and non-binary youth have been the subject of cyber bullying.

I live in a pretty liberal area, but there are so many bills around the country, it might only a matter of time before my family has to fight one as well, so we support the organizations that are fighting for us right now. If you live in a state with anti-trans legislation, please join and/or donate to one of the organizations that are fighting to keep people like my son able to play the sports he wants, get the medical care he deserves, even wear the clothes that he wants to wear.

Help Whack-The-Moles.

Organizations:

GLAAD: www.glaad.org

PFLAG: www.pflag.org

ACLU: https://www.aclu.org/issues/lgbtq-rig...

Human Rights Campaign: https://www.hrc.org

The deal with “seizure dogs”

February 20th is National Hug Your Pet Day. I don’t know who comes up with these ‘days’, but we celebrate that one about every five minutes at my house. Our dog is spoiled with love. She is also, I have come to find out, very good when I have a seizure. She stays with me, and waits to see if I am okay. We never trained her: it’s just part of her personality.

When it comes to seizures and dogs, there are two sorts of “seizure dogs". “Seizure dogs” is not an official label, but it’s sort of a shorthand, overarching term for a dog that helps someone either during or after a seizure, or more. A seizure dog can be one of two categories, and in some cases, can be in both categories.

1. Seizure response/assistance dogs. These dogs have been trained to respond to their owners having a seizure. They may know to bark to alert others in the house if their owner is having a seizure, they know to lie next to the person, they can put their body next to the person’s body to break a fall. Sometimes they may have been trained to press a button or a pedal to alert a designated person that their owner is having a seizure. These dogs stay with the person during and after the seizures to provide support and comfort, and can also act as a brace for the person to get up after the seizure.

2. Seizure alert dogs. There is some debate as to whether dogs can be trained to detect a seizure. There is little debate, though, that there are dogs out there whose behavior changes a few minutes before - sometimes longer - their owner has a seizure, and if the owner can put two and two together, he or she can get to a safe place, and this alert can be life-changing. The theory behind the dog detecting an impending seizure is that the scent of the person with epilepsy changes just before a seizure starts, and if the dog is trained to respond to that change in smell, they can be trained to alert their person to an oncoming seizure, either by pacing, pawing at the owner, or nuzzling them. Seizure alert dogs can also be taught all the skills of a seizure response dog.

There can be long waiting lists - sometimes over two years - for both seizure response and seizure alert dogs at the few organizations that train them, or they can cost up to $40,000 in training through a private trainer. Some of the organizations expect you to raise part of the money for the dog, some don’t expect you to do anything but wait and then show up for a training. Sometimes the training can be over a week, so be ready for that. But, don’t lose heart - apply at the organizations anyway, and your turn will come.

Below are some links to some organizations that train both kinds of dogs. If you are looking for a seizure dog, see if one organization fits you better than another and be patient. Your furry friend will come along.

Medical Mutts: www.medicalmutts.org. They train seizure alert/response dogs that they choose from shelters.

4 Paws for Ability: www.4pawsforability.org/seizure-assistance-dog/ This organization trains dogs for only for children with epilepsy.

Canine Assistants: www.canineassistants.org. Based in Georgia, this organization trains Golden Retrievers, Labradors, and Goldendoodles to be seizure response/assistance dogs.

Guardian Angels Medical Service Dogs: www.medicalservicedogs.org. They train seizure alert and seizure response dogs.

Little Angels Service Dogs: www.littleangelsservicedogs.org. Located in California, Little Angels trains seizure alert and response dogs.

Paws With A Cause: www.pawswithacause.org. Paws With A Cause trains seizure response dogs. They are very clear that they do not train or attempt to train seizure alert dogs.

Service Dogs for America: www.servicedogsforamerica.org. SDFA is located in North Dakota, and trains seizure response dogs for adults.

Autofiction? Memoir? #OwnVoices? Three ideas explained.

When I pitched my novel, I heard from several agents, “Why didn’t you just make it a memoir?” I told them that I didn’t want to write a memoir for several reasons, none of which seemed to resonate, but c’est la vie. One agent actually said that if my book was a memoir, he could have me on Good Morning America in six months, holding my book with a smile, and talking about it. But, as the book is not a memoir, I guess GMA won’t do it. (We’ll see.)

“There are parts that are autofiction. You know, it’s sort of an #OwnVoices book,” I tried to explain to no avail. Pure memoir or nothing.

Here’s the difference between these three terms. For those of you deciding how to tell your story, here are some avenues to consider. For the readers of you, here is a way to know what you are reading, and maybe have a fancy new term to contribute to the book group! (“Did you see that the author is [enter marginazlied group]? It lends such an #OwnVoices feel to the book, and gives a really authentic view of the characters’ experiences.”)

1. Memoir. A memoir has a slight novel feel, and is written by the person who experienced the event or events. It is generally about a specific time or a specific span of time in the author’s life. The difference between memoir and autobiography is not only that memoir allows for more creative liberty, but that an autobiography generally spans the person’s entire life: childhood to now. Memoir can do that, but the style will be different. In memoir, there is usually a take-away at the end: a lesson learned and imparted to the reader, and an ending where the author is moving on to their “new” life as - if not a better - a wiser person.

2. #OwnVoices books. This is a term that has popped up recently in the literary world. It is a novel written by an author from an underrepresented/misrepresented/marginalized group where main characters are from that marginalized group. Sometimes, #OwnVoices books are inspired by the author’s experiences, but the idea is that having a person who knows the ins and outs of this group on a personal level lends more authenticity to the writing. There have been questions raised about the breadth of #OwnVoices. Does having a trans son allow me to call a novel that includes a trans teen an #OwnVoices novel? (I can see you cringing now. The answer - in my mind - is no, so just relax.) The idea of the hashtag was to give underrepresented writers space to market their books by claiming their history and giving the work an extra sense of authenticity.

3. Autofiction. Oh, autofiction. Short for autobiographical fiction, it blends reality and pure fiction. Where does one end and the other begin is a question that many autofiction readers ask. Sometimes, some of the experiences in an autofiction book may mirror the author’s. Sometimes, even names are the same. But, it is still fiction, which you will remember as you read along comfortably enjoying (or not enjoying) the protagonist’s experiences until - BAM! - that person dies. But, the author is still alive, so… fiction.

For writers, there are a million reasons to pick memoir over autofiction or vice versa, to write an #OwnVoices book or to try to write outside of your socioeconomic class, race, age, or sex, thus avoiding any possibility of #OwnVoices. That’s the beauty of writing - we get to create and recreate and recreate worlds, true to life or not.

Auto fiction? Memoir? #OwnVoices? Three ideas explained.

When I pitched my novel, I heard from several agents, “Why didn’t you just make it a memoir?” I told them that I didn’t want to write a memoir for several reasons, none of which seemed to resonate, but c’est la vie. One agent actually said that if my book was a memoir, he could have me on Good Morning America in six months, holding my book with a smile, and talking about it. But, as the book is not a memoir, I guess GMT won’t do it. (We’ll see.)

“There are parts that are auto fiction. You know, it’s sort of an #OwnVoices book,” I tried to explain to no avail. Pure memoir or nothing.

Here’s the difference between these three terms. For those of you deciding how to tell your story - perhaps in a more fictional, less memoir way - here’s a guide. For the readers of you, here is a way to know what you are reading, and maybe have a fancy new term to contribute to the book group! (“Did you see that the author is [enter marginazlied group]? It lends such an #OwnVoices feel to the book, and gives a really authentic view of the characters’ experiences.”)

1. Memoir. A memoir has a slight novel feel, and is written by the person who experienced the event or events. It is generally about a specific time or a specific span of time in the author’s life. The difference between memoir and autobiography is not only that memoir allows for more creative liberty, but that an autobiography generally spans the person’s entire life: childhood to now. Memoir can do that, but the style will be different. In memoir, there is usually a take-away at the end: a lesson learned and imparted to the reader, and an ending where the author is moving on to their “new” life as - if not a better - a wiser person.

2. #OwnVoices books. This is a term that has popped up recently in the literary world and become very popular. It is a novel written by an author from an underrepresented/misrepresented/marginalized group where main characters are from that marginalized group. Sometimes, #OwnVoices books are inspired by the author’s experiences; sometimes having a person who knows the ins and outs of this group lends more authenticity to the writing. There have been questions raised about the breadth of #OwnVoices. Does having a trans son allow me to call a novel that includes a trans teen an #OwnVoices novel? (I can see you cringing now. The answer - in my mind - is no, so just relax.) The idea of the hashtag was to give underrepresented writers space to market their books by claiming their history and giving the work an extra sense of authenticity.

3. Auto fiction. Oh, auto fiction. Short for autobiographical fiction, it blends reality and pure fiction. Where does one end and the other begin is a question that many auto fiction readers ask. Sometimes, some of the experiences in an auto fiction book may mirror the author’s. Sometimes, even names are the same. But, it is still fiction, which you will remember as you read along comfortably enjoying (or not enjoying) the protagonist’s experiences until - BAM! - that person dies. But, the author is still alive, so… fiction.

For writers, there are a million reasons to pick memoir over auto fiction or vice versa, to write an #OwnVoices book or to try to write outside of your socioeconomic class, race, age, or sex, thus avoiding any possibility of #OwnVoices. That’s the beauty of writing - we get to create and recreate and recreate worlds, true to life or not.

Auto fiction versus Memoir versus #OwnVoices books - Is one better than the other?

When I pitched my novel, I heard from several agents, “Why didn’t you just make it a memoir?” I told them that I didn’t want to write a memoir for several reasons, none of which seemed to resonate, but c’est la vie. One agent actually said that if my book was a memoir, he could have me on Good Morning America, holding my book with a smile, and talking about it. But, as the book is not a memoir, I guess GMT won’t do it. (We’ll see.)

“There are parts that are auto fiction. You know, it’s sort of an #OwnVoices book,” I tried to explain to no avail. Pure memoir or nothing.

Here’s the difference between these three terms. For those of you deciding how to tell your story - perhaps in a more fictional, less memoir way - here’s a guide. For the readers of you, here is a way to know what you are reading, and maybe have a fancy new term to contribute to the book group! (“I love that the author is [enter minority group]. It lends such an #OwnVoices feel to the book, and gives a really authentic view of their experience.”)

1. Memoir. A memoir has a novel feel, and is written by the person who experienced the event or events. It is generally about a specific time or a specific span of time in the author’s life. The difference between memoir and autobiography is not only that memoir allows for more creative liberty, but that an autobiography generally spans the person’s entire life: childhood to now. Memoir can do that, but the style will be different. In memoir, there is usually a take-away at the end: a lesson learned, an ending where the author is moving on to their “new” life as - if not a better - a wiser person.

2. #OwnVoices books. This is a term that has popped up recently in the literary world and become very popular. It is a novel written by an author from an underrepresented/misrepresented/marginalized group where main characters are from that marginalized group. Sometimes, #OwnVoices books are inspired by the author’s experiences; sometimes having a person who knows the ins and outs of this group lends more authenticity to the writing. There have been questions raised about the breadth of #OwnVoices. Does having a trans son allow me to call a novel that includes a trans teen an #OwnVoices novel? (I can see you cringing now. The answer - in my mind - is no, so just relax.) The idea of the hashtag was to give underrepresented writers space to market their books by claiming their history and giving the work an extra sense of authenticity.

3. Auto fiction. Oh, auto fiction. Short for autobiographical fiction, it blends reality and pure fiction. Where does one end and the other begin is a question that many auto fiction readers ask. Sometimes, some of the experiences in an auto fiction book may mirror the author’s. Sometimes, even names are the same. But, it is still fiction, which you will remember as you read along comfortably enjoying (or not enjoying) the protagonist’s experiences until - BAM! - that person dies. But, the author is still alive, so… fiction.

For writers, there are a million reasons to pick memoir over auto fiction or vice versa, or to try to write outside of your socioeconomic class, race, age, or sex, thus avoiding any possibility of #OwnVoices. That’s the beauty of writing fiction in a way - we get to create and recreate and recreate worlds of our own making.

It’s good fun.

And I’m Supposed to Get Around How?? What to Do If You Can’t Drive.

I haven’t driven since 2018. That’s a long time, and a lot of money to Lyft and Uber. (Logan Green and Dara Khosrowshahi, call me. I’m probably keeping your companies solvent and would like a discount!) When my neurologist first told me that I couldn't drive anymore, I thought it would just be for a few months - six months, most. Well, six months turned into eight, turned into a year, turned into - you get the picture.

I’m hoping - hoping - that with this RNS device, I’ll be able to drive next year. But, in the meantime, here are some ways that I have found helpful to get around Portland.

1. Lyft and/or Uber. I rely a lot on these two companies. One driver actually commented on how many rides I’d taken, telling me that I had the “most rides out of any customer” he’d seen. Not a compliment, but he meant well. Let’s go through pros and cons of rideshare apps.

Pros: The apps are pretty user friendly - you can track your ride, contact the driver if he/she/they are going the wrong way, the cars are generally clean, and the apps have developed “share my ride” buttons, so that you can let others know where you are. They have become safer, and the drivers are generally respectful.

Cons: The costs of taking a Lyft or Uber adds up financially. There are “peak" hours, which sometimes cost twice the amount of other times. Sometimes the cars aren’t great, sometimes the drivers can be rude, sometimes the app takes them wonky ways to get to a place, and you can either stay silent in the backseat or let them know they should go another way. If you do the latter, you are rolling the dice on getting a lower ‘rating’ if the driver thinks that Google Maps is worth more than your personal knowledge. I have also discovered, in my 6 years of riding that if the app says the rider will be there in 5 minutes, it’s probably going to be 7 or 8. You know your area better than AI does, so you know how long it takes to get from NW to SE going over bridges with traffic.

All those cons said, Lyft is my main method for getting around town. I have it in my monthly budget. I find that - except for the cost - the good outweighs the bad.

2. Walk/Biking. I live in a walkable area, and a city that is very bike-friendly. I can get to my local grocery store by foot in about 5 minutes. Our neighborhood is like a little town in itself, so I’m very lucky that way. I can also bike around (I have an e-bike, which makes it easier to keep my heart rate down) on the many bike paths in Portland.

If you live in a walkable area, this is an option. Of course, there are so many days in Portland where the weather is a deterrent to walking/biking anywhere or, if I’ve had a seizure, it’s just not in the cards, but it is another tool in my transportation arsenal.

3. Public Transportation. I used to use the bus to get to downtown - the bus stop is literally one block from my house. It took the same amount of time as driving (except for the waiting part), and I found that I could do some work or reading on the ride. Of course, COVID has taken that option away for some people, bus schedules have been pared down a bit, but it’s still a viable option if I need to get to certain areas of Portland.

4. Friends & Family. I have heard so many times “Anytime you need some help, call me.” or “I’ll totally run you to the store! You don’t have to take a Lyft!” And I love the intention behind these phrases, but let’s say I need to go to the store in the middle of the day on Monday. My list of people who promise to take me places is thin, and I know that. However, I do have some friends that I can count on to live up to their word, and you only need one or two who are happy to drive you across town to pick up your meds.

“But, Sara, I live in a rural area where they don’t have Lyft, the bus is five miles away, and the nearest grocery store is a good ten miles from my house!” Your best bet is option 4. Call on those people who have promised to help you. Maybe arrange a schedule with them - ex/Every Sunday night/Monday all day/Wednesday they will come and take you where you need to go. Don’t be shy about asking. You need help, and you deserve to get it.

Not driving is not fun. If/when I can drive again, I’m driving everywhere and will never complain about traffic because I’m behind the steering wheel of my own car. Or, if all the car companies who brag about making self-driving cars could hurry up with actual self-driving cars - ones where I can sit in the passenger seat, my kids can be in the back, and the car will just do its thing - that would be great. I’m talking to you, Elon.

Real Life Role Models = Invaluable

I asked my youngest son “What should I write about in my next blog post?” He said, “Me.” I said, “What about you?” He said, “How about how exciting it is to have transgender friends?” So, there you go.

Buddies: There is a transgender kid at my son’s school who is in the middle school. I spoke to the counselor of the middle school, and we arranged for them to be “buddies” - my 8-year-old transgender boy and this 13 (or 14 - I’m not sure) - year-old transgender boy. They have their first hangout next Monday, during lunch. My 8-year-old is beside himself. He is so excited to meet his buddy. What will they talk about? I don’t know. I doubt they’ll talk about being trans for all of lunch, but maybe they will. All that matters to my kid is that his buddy is a trans kid who is older, has been through more, and understands exactly what my son is going through. Because I can be as gender-affirming and supportive as ever, but I’m not trans. I don’t know what it is like to actually be trans. I can look on from the outside, hug my kiddo, listen to him, but when it comes to the experience, he needs and he wants someone who can truly relate to him.

IRL Representation: I’ve written about the importance of representation of minority groups in media, but the importance of representation of minority groups IRL is invaluable. When it comes to trans kids, having a person there - not just a celebrity on TV - makes a huge difference, and in a good way. Celebrities and public personas are great to see and to inspire queer kids, but meeting someone who is going through or has been through what you are experiencing? That is a whole new level of reassurance. Even if the kid says “You know, middle school can be tough,” my son will come home, report that and, as a family, we can talk about it.

My son has been asking for a trans buddy since the beginning of the school year. Now that it’s finally happening, he is counting the days (and planning what he is going to wear). This post was all his idea, so I think that shows how much real life, normal-person representation can mean. He just wants some trans kid to take him under their wing and show him that “Hey, I’m here. It’s cool. You can make it too.”

Dedicated to: My Best Youngest Son

Tips on Living a Full Life with Epilepsy

I met with my neurologist yesterday, and told him that things seemed to be going better seizure-wise, so I had started taking a rock climbing class. He was extremely supportive, and suggested that I not belay the other women in the class - just for their safety. I hadn’t thought of that, but realized that for other’s safety, that was probably a good idea.

I love this rock climbing class. A year ago, two years ago, I would have laughed at the idea of rock climbing. I could just picture myself at the top of the wall when all of a sudden - well, you all get the idea. So, over the past 20+ years, I’ve learned how to live with epilepsy, and have a pretty full life. (Is that a humble brag? I don’t know. I’m just trying to spread some positivity in this crazy world.) Here are some lessons I’ve learned - the easy and the hard way.

1. Work within your limits. Uncontrolled epilepsy can limit what hobbies, activities, professions that you are able to do. And that’s okay. The world is full of things that we can do; we just have to figure out what those are for each of us, and how to do them. If you have multiple tonic-clonic seizures every day, then maybe you can’t work outside the home (or maybe you can), and I know that your brain feels like it’s just run a marathon without training so I am in no way discounting that. Maybe your full life looks like snuggling with a dog, finding a support group online that you can just go to and listen - camera off and eyes closed while you recover - ordering in pizza and having a friend over to sit with, talk to, or watch a movie with. If you have more well-controlled seizures, you might have more options - exercising, going to work, spending more time outside the house with friends/family/whoever you find fun.

I’ve learned that I push my limits a little too far sometimes, and it ends up being a two steps forward, one step backwards situation. (Ask my husband.) So, be better than I am: figure out what you can do, accept what you can’t do (which is so frustrating, I know, I know), and work between those ends.

2. What brings you joy? Do that. I love reading, writing, and lots of other things that I don’t have time for, but when I do them I’m happy. Epilepsy can be depressing. If I have a complex partial seizure, I generally end up crying afterwards. I try not to, but I am just so sad about it! Seizure clock restart?! The worst. So, I spend my non-seizure time doing things that make me feel good. Or at least I try to - it’s not possible to be doing ‘fun’ stuff all the time, but find what makes you happy and spend some time doing that on a regular basis. But, see Tip #1: Work within those limits.

3. Try to socialize. After the pandemic lockdown, I think we realized how important friendships are. Long times by yourself can get lonely - very lonely. Try to socialize however you can: by Zoom, having people over, going out with friends and/or family. Talk to people who understand that you might not be as reliable a companion as someone without epilepsy (i.e. they might need to come over to your house instead of going out to the restaurant as planned if you have a seizure while getting ready), and try to establish relationships with those people - people who don’t judge you and are willing to sit in your living room or by your bed watching a movie, and count that as a win. FaceTime and/or Zoom are great ways to be social with family and friends as well.

Epilepsy can bring us down and make us forget that there is a life worth living, and that we can find purpose in life. It doesn’t have to be a huge deal - no one is pushing you to be the next great [enter activity here] - but living within limits, doing something that makes you happy on a regular basis, and finding a social group that understands you and seizures can put you on the track to living a great life.

What do sensitivity readers really do?

If you’re writing a novel that may include some sensitive language for certain groups and you’re not a part of that group - well, first of all examine if you should be writing this novel, and examine why you chose this plot/these characters/this minority group - sensitivity readers are invaluable. For example, I’m writing a YA novel about a trans teen. I thought I had it down - I’m the parent of a trans kiddo, I’ve read all about trans kids, I know the lingo, I’m hip. (Don’t quote me on that last part.) Then I had a sensitivity reader review it. They were closer to the age of my characters, non-binary, and knew a lot more about the actual experience of being in the trenches as a non-cis person than I did. Let me just say, they were worth the money and the waiting time. Here’s what sensitivity readers do:

1. They help make your book authentic. I’m not an Indian woman, so I’m probably not going to write a book where the protagonist is an Indian woman anytime soon. (But, if you want a great one read “Good Talk” by Mira Jacobs. A classic example of her childhood experience is page 39.) My sensitivity reader helped me understand how teens today react to an outing - whether intended or not - of a trans person. And it’s not how I first wrote it. So, if you want your book to land with your audience and you aren’t fully familiar with that culture/group/etc. - even if you think you are - get a sensitivity reader.

2. They can keep you from getting bad reviews. Good reviews are everything. Seriously. People don’t buy books with one star or two star reviews. We all have so much to do with our time - why waste it on a book that everyone hates? Sensitivity readers can help improve your book, so that things flow better, scenes are cleaner with regard to details - what to put in, keep in, take out - and that will lead to a better book and better reviews.

3. They can keep you from getting eviscerated online. In this cancel culture, you don’t want to get cancelled. My husband is furious that people are so judgmental so quickly, but I don’t think I’d buy a book that has been deemed transphobic “just to make sure that it is.” I might watch a Netflix special with a bad rep, just to see what I think, but that’s $20 a month, and I can turn [name comedian] off anytime if I agree with the majority. Informed decision. It’s not that easy with a book. A book can cost just as much as a month of Netflix, and if everyone on Twitter and Bookstagram and TikTok is saying “This book is against [insert minority group], so don’t buy it,” you, as the author, will probably wish you had someone look over it before it was published. A sensitivity reader will keep you from that pain.

4. You may get an agent quicker. Agents have reputations to uphold, and in this day and age, being racist, homophobic, transphobic, against any sort of ethnicity or minority group, is not going to help them sell books. For example, I don’t think that any agent would pick up a book that exalted the KKK. Maybe I’m wrong; however, I have yet to see a #MSWL where an agent is asking for a pro-KKK book. An inside view of the KKK where the author escaped and now is a better cis white male? Maybe... But, a memoir of his fond memories with the KKK that continues to this day and leaves the reader with “So, he’s still in the group and actively participating…?” Get a sensitivity reader.

Maybe you have someone in your social circle who can read your book as a sensitivity reader. Maybe you have to reach out and pay someone. My advice (which is a saying that comes from my grandmother) is that it’s “money well spent.”