Sara Staggs's Blog

I’ve never been dumped because I have epilepsy. I’ve had failed relationships for other reasons - which are too long for this blog post - but epilepsy was not one of them. Having been married for 17 years, I never thought about what my life would look like if epilepsy had been a factor in whether someone stayed with me or not. But, over the past year, at book signings, at speeches, at epilepsy events, I’ve talked with people who said that they only date other people with epilepsy or that they have a hard time finding someone who will stay with them after they have a seizure.

I find this shocking. I find this shallow and ridiculous, but I have also heard it enough to know that it’s a real thing. For what it’s worth, here are some of my tips on dating people who do not have epilepsy (and probably don’t know a lot about it).

1. Tell the person you have epilepsy early in the relationship. I don’t know if this is a first date conversation, I will leave that up to you, but if one date turns into two or three, it’s time to tell the person. And tell them with confidence. There is no need to apologize for having a seizure disorder. I know this can be hard, but it’s not something to be embarrassed about. It’s a chronic condition that you didn’t ask for and are just doing your best to control. Give the person you are dating your seizure “backstory” and let that be the first test for them. If they don’t respond well, at least you haven’t wasted too much time on someone who isn’t going to be there when you really need them.

2. Explain to them what to do if you have a seizure. Let’s assume that you told the person, and they are still there. Time to do some seizure first aid education. Start with “First, take a deep breath…” and go from there. Explain what they should do and what they shouldn’t do. Most people don’t know anything about epilepsy first aid, and if you are going to spend a lot of time together, they need to know how to respond if you have a seizure. Consider this test number two.

3. Be patient and determine if this is a good fit. At some point you will probably have a seizure in front of this person. I had a seizure in front of my now-husband just two weeks after we started dating. And he stayed. Twenty years later, who-knows-how-many-seizures-later, several brain surgeries and medication changes later, he is still with me. He passed all the tests that I didn’t know were even needed. Just like when you make a medication change or have a surgery, and the doctors tell you to “Be patient. We don’t know if it worked yet,” you probably won’t know if this person is going to be there for you through the good and the bad for a few months, unless it is really clear from the start that they either are or they aren’t. If you have a seizure in front of them and they stick around, that’s a good sign. If you have a seizure and then they ghost you, good riddance. They have failed test number three.

Having epilepsy does not make you a social pariah. It does not mean that you are not worthy of love - all the love in the world. It does not meant that you should settle for someone you don’t particularly like. If they have a problem with your seizure disorder, they are not worth your time. You deserve someone who passes all the tests and is in for the long haul.

My trans son came home and reported that one of his classmates little brother “wanted to be a girl,” but his mom “wouldn’t let him.” My first thought was “I should talk to that mom. I can help her out.” My second thought was “Actually, it’s none of my business.” My third was “But, isn’t it?”

I know that for many parents it can be hard to accept your child as transgender or non-binary. According to my 8-year-old, the mom was worried about her kid being bullied. I get that. My 8-year-old was bullied a bit when he came out in first grade, but, two grades later, that’s all done. Part of the reason he’s no longer bullied is that we were behind him, we supported him, we fought for him and made the school take some action. So, I asked him to give me three reasons of why it’s important to support your kid if he/she/they tell you that he/she/they are trans or non-binary.

Here are the three that came out right away:

So your child won’t be sad. The amount of depression and anxiety among trans/non-binary kids and teens who are not supported by their families and/or their communities is staggering. If you do not support your kid in their gender-identifying journey, studies show that there is over a 50% chance that your child/teen will become depressed, almost a third develop anxiety, and the attempted suicide rate is almost 20%. If you do support your kid in their gender journey, especially if they are accepted by the outside community and their peers, they generally have the same mental health as their cis-gender peers. Personally, with my AFAB (assigned female at birth) kid who identifies as a boy, I’d rather have an alive son than a dead daughter. The reverse is the risk you are taking if you don’t let your kid express themselves in their gender identity. If you force them to hide who they truly are, if you tell them you don’t believe them, or give any answer really other than, “Okay. I love you. Thank you for telling me,” you are putting your kid’s mental health at stake. You love your kid for who they are, even if who they are is hard for you. And remember that….

Your kid is going to be trans anyway. You can force them into clothes they hate. You can refuse to use their preferred pronouns. You can do all the things to make them hide their true feelings about who they are, AND they’re going to be trans whether you support it or not. It’s better to support their gender identity and help them live the life they want to live because when they leave the house at whatever age that is (assuming they don’t kill themselves in high school), they’re probably going to do all the things you wouldn’t let them do. Your AMAB (assigned male at birth) is going to wear dresses and heels. Your AFAB is going to start going by he/him. And they will do that when they come home, when they see your relatives, on social media - all the things. Support them at whatever age they come out. Let them know that you still love them. That it’s okay to be trans or non-binary. They will identify with that gender anyway, and one day it will manifest itself outwardly.

Your kid will grow up to hate you. This is harsh, but it’s what my trans son said. And he’s only 8. But, if you think about it, it’s true - even if you thought you were doing the best thing for your kid by not letting them be who they really were. It’s even more likely if you told your kid that being trans was “bad” or “unnatural.” Your relationship with your kid will deteriorate over time until there may be no love left on their side. Imagine if you were AMAB, identified as a male, but your parents would only let your wear dresses and have your hair long, even when you begged them to let your wear boy’s jeans and blue t-shirts. Imagine that they only called you she/her, no matter how many times you tried to correct them. Imagine having to endure that for 18 years. How would you feel towards your parents? After 18 years, your relationship with your parents would probably be in tatters, and it would take a lot of therapy to get over what is basically mental abuse. Please, please, please, respond to your kid coming out with love, kindness, and support.

This is advice from a trans kid who has been through a lot in the past two and a half years. I’m writing this as a mother who didn’t see the coming out coming, but has seen her son blossom through support by his family, his school, and our extended community. If you have questions or need some answers, you can contact me. I can help you, and I will help you without judgment. The first step is to give your kid a hug, say “I love you,” and work with them to achieve what they want out of their gender identity.

Information/Resources on Transgender and Non-Binary Kids

Studies on Mental Health in Trans/Non-Binary kids and teens: https://jamanetwork.com/journals/jamanetworkopen/fullarticle/2789423

https://www.hsph.harvard.edu/news/hsph-in-the-news/transgender-youth-at-risk-for-depression-suicide/

https://www.endocrine.org/news-and-advocacy/news-room/2020/transgender-teens-have-high-rates-of-depression-suicidal-thoughts

Resources for parents of TNB kids:

http://www.transyouthequality.org/for-parents

https://www.hrc.org/resources/transgender-children-and-youth-understanding-the-basics

https://genderspectrum.org/articles/gender-spectrum-groups

My son loves to draw American flags. He is so proud to be an American. The cynic in me wants to tell him to stop drawing those flags because I don’t even know if we’re one country anymore, and that if he puts those flags up around our house and on our porch (he stuck one in a potted plant on our porch steps), people will think that we are anti-LGBTQ+, anti-women rights, pro-book banning. But, my better half (that being my husband) pointed out that thoughts like that are what keep us divided.

“Everyone should be able to fly an American flag,” my husband said. “No matter who you vote for.”

And he’s right. When did Old Glory become politicized? When did the American flag become an object that symbolized a certain belief system instead of a country? Somewhere in the past decade, our flag - our country’s flag - stopped standing for our country, and started indicating that you were a non-vaccinated Proud Boy.

My son is 8 and doesn’t see it that way. So, we have at least three homemade American flags around our house and one on the porch.

We don’t have any Pride flags around. We have trans sign buttons and posters he made from the school Pride parade, but the Pride flag is not a part of our house’s decor. It’s not on purpose; we just haven’t bought one yet. So, when I walked past a shop on the 4th of July and saw a Pride flag flying next to an American flag, I thought, “That’s awesome. That’s right.”

As divided as we currently are, I am choosing to follow my son’s lead and my husband’s encouragement: we can come together. We are not all extremes. I am choosing to hope that sooner rather than later, politicians will stop trying to tell me what medical treatment I can allow my son to have. I am choosing to hope that sooner rather than later, Judy Blume books will not be banned under the label of ‘pornography.’ And I am choosing to hope that if we just sit down together, under the American flag and the Pride flag, we can discuss our differences and realize that we’re not that different after all.

After years of having to tell people that I have epilepsy, and waiting with bated breath for their response, I have learned a few things about timing and expectations. Here are a few tips on how and when to disclose you have epilepsy for different groups in your life:

1. For employers/coworkers. First of all, you do not have to say that you have epilepsy during your job interview. It is also illegal for someone to ask if you have any disabilities during an interview. Please do not apply for any jobs that will put you in danger if you have a seizure. (You can decide this for yourself based on your seizure control.)

I found it best to tell my employers and co-workers after I secured the position, and generally within the first week or so. This also allows me to teach them seizure first aid before I have a seizure, should I ever have one at work. Again, you do NOT have to tell the person interviewing you that you have epilepsy, and, in most situations, the ADA protects you from being fired because you have a disability. Epilepsy counts as a disability.

2. For friends. If you are newly diagnosed with epilepsy, you may be a bit embarrassed to tell your peers. That’s okay. I get it. I hid the fact that I had to take medication the whole time that I was a teenager because who wants to be “different” for epilepsy when you don’t have to be? My seizures were totally under control, and all I had to do was take one pill in the morning (before school) and one in the evening. So, if my friends did know, it never came up.

If your seizures are completely controlled by meds, you probably have a choice of who to tell and who not to tell when it comes to friends and peers in general. I recommend telling your closest friends for a few reasons: (1) There’s always a chance that you could have a seizure, and they need to know seizure first aid, and (2) being diagnosed with epilepsy can be a big deal and a good friend will be someone that you can lean on emotionally. If your seizures are not well controlled, you may have to tell a few more people, especially the group that you hang out with the most. They will definitely need to know what to do in case of a seizure.

3. Teachers/Professors. If your seizures are not well controlled, these people will need to know. This can be done in several ways. (1) Depending on your age, your parents can/will take care of it. (2) You can send a professor or teacher an email with a quick run-down of what to expect and what to do in case of a seizure with a link to a seizure first aid website. Links are below in “Resources.” (3) You can tell them in person. This is best done when they are not busy or distracted by anything. Make an appointment during their office hours. Set up a time between classes. Make sure they have time to listen fully and ask any questions. And, of course, depending on your age, you can also refer them to your parents.

4. New Roomates. When I moved to law school, my first year I lived with five roommates in one giant house. The second day that I moved in I sat them all down on one of our couches, told them I had epilepsy, what to do if I had a seizure (at the time I was having tonic-clonic seizures) and asked them if they had any questions. They didn’t, and the conversation was a lot less painful than I thought it would be. The reaction was basically, “Okay. Cool. Beer?” If you move in with new roommates, tell them sooner rather than later. I promise you that they will care less than you think they will.

5. Romantic Partners. This is where it gets tricky. I’ve heard of all sorts of responses from people who told the people they were involved with about their epilepsy. But, I will tell you this: if the person doesn’t take it well or breaks up with you and you think it was related to seeing you have a seizure or the fact that you have epilepsy, they don’t deserve you. You are worthy of love, and unconditional love. Tell them when you are comfortable - maybe it’s the first time you hang out, maybe it’s a few weeks in, but I suggest that you do it early for two reasons: (1) If your seizures aren’t well controlled (are we seeing a theme here?), they need to know what to do if you have one, and (2) you need to know their reaction. Don’t waste your time with someone who can’t deal with the fact that you have a seizure disorder. They aren’t worth it.

Telling someone you have epilepsy can be scary - it’s not much talked about in the public - but you can change that. Remember that having a seizure disorder is nothing to be ashamed of (although I know that it can feel like it is), you cannot get fired for it, and anyone worth having in your life will see you as more than someone with epilepsy. They will see you as the awesome person you are.

Resources

Seizure First Aid from the Epilepsy Foundation: https://www.epilepsy.com/tools-resources/forms-resources/first-aid

Seizure First Aid from the CDC (also has links to mental health for people with seizures): https://www.cdc.gov/epilepsy/about/first-aid.htm

Meds, devices, jet lag, new schedules - put it all together, and traveling with epilepsy isn’t as easy as traveling, well, without epilepsy. As someone who travels a lot, I have found a few travel hacks that make it more likely I will get through seizure-free.

1. Always put all your meds in your carry-on. If you’re traveling by plane, don’t check your meds. This may seem obvious, but I know some people who do it. “But, Sara, I have the dose that I need for the day, and I won’t need to take another until tomorrow.” That’s fine. I’m happy for you. AND keep the meds on you, so that when the airline loses your luggage or you are stuck overnight at the airport because of that crazy, unforeseen climate-change snow storm, you have everything you need right where you are. My mom used to double check before I’d fly back to college: “Meds? Money? ID?” So, now I’m going to channel her. Check your carry-on several times before you leave. Meds? Good!

2. Bring a few days’ more meds than you need. I took a two month road trip last summer, and my medication filled two gallon-sized plastic bags. I told the insurance company that I would like a little cushion of meds - for me, a week. It took the pressure off in case of an emergency. You can either have your doctor’s office arrange that for you or you can make a phone call request to the insurance company yourself. (They will then probably refer you to your doctor for the specific paperwork, but at least there is a note of you calling as well.)

3. Plan for jet lag. Is sleep deprivation a trigger for you? Plan to arrive a day or two earlier than you would if you didn’t have epilepsy to get used to the time difference. For example: you’re going to a cousin’s wedding on the East Coast and you live in California. Instead of pushing your arrival to Friday and going straight to the rehearsal dinner, arrive on Wednesday or Thursday if you can, and get your body acclimated to the new time.

4. Plan for adjusting the time you take your meds. You will also need a plan for taking your meds at the new time. If you are only staying for a night and you are one time zone over, it’s not a big deal. If you are staying for a week and you are six time zones over, you will have to figure it out. I found that a gradual change over the days evens out on about the 3rd day. Yes, it’s a pain having to get back to normal when you go home, but it’s better than having a seizure.

5. Know whether you can go through the metal detector if you have a device. I don’t know about the VNS or a DBS implant, but my RNS instruction manual said that I shouldn’t go through airport metal detectors. So, every time I get to that part of the security checkpoint I say, “I have a pacemaker in my brain. I can’t go through the metal detector.” And, every time, they take me to either the checkpoint where you just stand there with your arms up or I get a pat-down from a friendly female TSA agent. Know whether you can go through a metal detector, and, if it will affect your device, don’t let the TSA workers pressure you into doing it. I’ve never had pushback, and hopefully you won’t either.

6. Travel with someone - someone who knows what to do if you have a seizure. It’s always more fun to travel with a buddy than traveling alone, right? If you are traveling for business, this may not be a possibility, but going on vacation? Don’t go it alone! Bring a friend, make it a girls’ trip, a guys’ trip - whatever! Be sure that at least one person in the group knows what to do if you have a seizure.

Remember - have fun! Traveling with epilepsy takes a little more forethought, but with some planning, your brain doesn’t have to hold you back.

On a walk with my 8-year-old last weekend, we passed a sign on a lawn that said “Our Gay and Trans Kids Will Not Be Erased.” He slowed down to look at the sign, and then asked me what ‘erased’ meant.

“It means we won’t pretend that they don’t exist. We won’t make them disappear,” I answered, caught a bit off-guard.

“So, is that a good sign?” he asked.

“Yes,” I said. “It’s a good sign. It’s a supportive sign.”

“Who wants us to disappear?” he asked. “Why do they need that sign?”

Oh, Lord. The names of politicians projecting anti-trans agendas ran through my mind. Laws that limit words, medical access, bathroom usage, swirled in my head. I wanted to explain this to him and not explain this to him. But, he’s only eight. He deserves to live a little longer as a child, shielded from slates of hate, innocent of the fact that a significant part of our country doesn’t want him to be who he is. That information is slowly seeping into his life anyway. I don’t need to push it.

“Just some people don’t understand what trans is,” I said. Not a lie, yet not an answer. We kept walking and I changed the subject.

How am I going to explain the anti-trans movement to him? When is the right time to delve into specifics? There’s no blueprint on how to parent your trans kid, but here are some ideas that I’ve taken away from conversations with other parents of trans kids that I think are decent guides on when and how to explain what is happening in our world.

1. Consider the age. An 8-year-old can’t understand the nuances that a 15-year-old can. Littles probably don’t have access to the same information that teens do. Be conscious of the fact that a second grader might not be able to have a long discussion about legislation and access to gender-affirming care without being overwhelmed by the words and confused by the complexity of the issues. My friend had a discussion about specific anti-trans legislation with her 13-year-old trans son, and he was able to understand that people were fighting for trans rights just as hard as people were fighting against trans rights. He had heard about the legislation from friends in school, and wanted more information. My 8-year-old isn’t hearing about anti-trans legislation on the playground, so I’ll just let him play.

2. Consider the purpose. Why do you want to talk to your 9-year-old in detail about what is going on in Florida or Texas? Do you live in an area where transphobia is the norm? If so, you might want to talk to your kid about safety at a younger age than a person who lives in a nice little LGBTQ+-supportive bubble. I’m just going to let the anti-trans legislation discussion sit a bit longer because we do live in one of those bubbles. I have the luxury of not having to warn my kid to be careful or worry about his physical safety at school. If that is not the case - and I’ve spoken with parents who live in Texas and Florida - you will probably need to have a discussion at a younger age than those of us who live in more liberal states. Remember to use age-appropriate language to communicate your message. If you do live in an area where trans people are accepted and supported, you might want to wait a bit longer to introduce the idea of anti-trans legislation to your kiddo.

3. Be aware of the effect. Imagine if your mom or dad sat you down and said, “A lot of people in the country hate you. No, they don’t know you, but they just hate the idea of you existing. So, any questions?” Now, I know that as a parent of a trans kid you will be more tactful than that, but at the end of the day, that’s the reality and might be the takeaway. Be prepared for tears, anxiety, hard questions, and choose your language carefully. Make sure that your kid knows that you love them and support them. Yes, at some point the bliss of ignorance is going to be torn away, but please use the least anxiety-producing language that you can in explaining what is happening, and be as educated as you can be before initiating any discussions. If the discussion isn’t ‘necessary’ (read: your kid is young and anti-trans legislation isn’t affecting their day-to-day life), you can wait a bit. A 7-year-old trans kid who lives in a supportive state doesn’t need to know who DeSantis is. These conversations are hard enough, and will come up eventually no matter where you live. Choose your words carefully, while still being honest. Again, the age of your trans kid should determine the way you deliver any information needed.

The look on my trans son’s face after seeing that sign broke my heart. I know that I can’t shelter him forever, nor do I want to. But, I’m going to wait to give details until he asks because I can wait. Where I live, we have support and that gives me (and him) time. Maybe, hopefully, by the time he comes home and asks what “Don’t Say Gay” means, there won’t be a “Don’t Say Gay” law anymore. Maybe, hopefully, there will be a Supreme Court decision that says the government can’t decide what medical care my child needs or doesn’t need. Right now, those are not the answers to those questions, so have anti-trans discussions with your trans kid carefully and accurately, and always let your child know that you support them and not a slate of hate.

Part of promoting your book might be appearing on some morning shows, or being interviewed about your book on-camera in some way. Maybe it’s Zoom, maybe it’s in-studio, maybe it’s in another location, but the general idea is the same: talk about your book and the issues it deals with. The network will likely be more interested in a tie-in with a current theme (ex/ talking to an LGBTQ+ author about their new LGBTQ+ novel during Pride Month or talking about epilepsy during Epilepsy Awareness Month), so keep that in mind when submitting your pitch.

For some people, the idea of being on-camera is beyond scary, and I find that things are much less frightening when you know what to expect, so here is what I have learned/seen over the past six months of doing different interviews about Uncontrollable, and some tips to help you perform your best.

1. The studios aren’t enormous, and, if you get nervous talking in public, you can pretend that it’s just you and the anchor talking. Except for the cameras that the anchor reads from, the room is pretty dark. The lights will be on you and the anchor, so take a deep breath, and pretend that you are just talking to a friend. A friend you just met, but still a friend.

2. Different shows deal with questions differently. I had a show that wanted me to submit the actual questions, which made it very easy to prepare. I had a show that sent a form for me to fill out with a general idea of questions, and I was able to look over the anchor’s questions quickly before I went on, so there were no big surprises. Then, I had a show where I didn’t hear from them about the script until I got there, the producer handed it to me three minutes before I went on with a “This good?” Sure. If it’s good for you guys, I can wing it.

3. The anchor might surprise you with a question you didn’t expect. I’ve had a couple of surprise questions - even from the anchor who showed me the list of questions. One answer went well, the other answer didn’t go as well, but now I have an answer to any varation of that “surprise” question that may come up in the future, so surprises can be good!

4. On local shows, you will likely have five minutes max. So, talk fast. Know what you want to say. Have the answer to “What is your book about?” down to 30-45 seconds. If you have time to look at the questions before the interview put together a 3-4 sentence answer for each that you can work from.

5. Wear something that makes you feel good. If you feel like you look good, you’re ahead of the game. There is something true behind that “Look Good, Feel Good, Play Good” theory that doesn’t only apply to athletes. When I go on camera, I like to wear a dress, have my make-up done, and a blowout. That makes me feel good. And when I feel good, I generally do well. Wear what makes you look good and feel confident because, as the wise Deion Sanders once said, “If you look good, you feel good, and if you feel good, you play good.” I find that’s actually true.

However your interview goes, you can be proud that you have done it, and I bet you will walk away with a “that-wasn’t-as-bad-as-I-thought-it-would-be” feeling.

Yes, Pride Month is smiles and parades and living your truth with rainbows. It’s JVN waving from a float wearing a sparkly dress in NYC. It’s my son giving me a trans flag pin, and leading the school Pride parade. It’s a community celebrating itself and making itself visible.

And, the reason that I’m a little down this Pride Month, is that it’s a community under attack, so all the shiny, sparkly, colorful activities in the world seem to be a little duller. But, let’s stop my pity part and get on with it. Here’s how you can make a real difference during Pride Month:

1. Buy your stuff from LGBTQ+-run stores. Is there a bakery near you run by a gay couple? Shop there. Buy a shirt online from a LGBTQ+ organization. (I bought the cutest shirt that says “HUMAN” in the different flag designs. Love it.) Spend your money to support real people in the real world directly.

2. Contact your U.S. and State representative about anti-trans legislation. It’s everywhere, and it needs to stop. PLEASE contact your U.S. Representative and state legislator, letting them know that you do not support anti-trans legislation. OpenStates.org also allows you to see what exact bills are being proposed in your state at the moment. Take a second to look through what’s coming, and then refer to a specific bill if you want, or just be general. Every email makes a difference. I’ve put quick and easy links to contact your representatives in the “Resources” section.

3. Donate to LGBTQ+ organizations. Non-profits sometimes run on a shoestring. There is a list below of LGBTQ+ non-profits. Even the amount of a cup of coffee makes a difference. I know it sounds cynical, but it’s true: money talks. The more money the LGBTQ+ organizations have, the louder they can be, the more help and support they can provide the queer community in the form of support groups, camps, activities, safe spaces, political pushback, and just being there.

Now, I’m going to put on my little trans flag pin, my HUMAN shirt, and shuffle the kids off to school. Happy Pride, everyone!

Political Resources

Find Your Representative: https://www.house.gov/representatives/find-your-representative

Find Your State Legislator: https://openstates.org/find_your_legislator/

LGBTQ+ non-profits

Sexual & Gender Minority Youth Resource Center: https://newavenues.org/smyrc/ An amazing non-profit that supports LGBTQ+ youth with a safe space, where they can create art, play music, join open mic nights, drag shows, and support groups. Also provides counseling, school support, and much more.

Cascade AIDS Project: https://www.capnw.org A queer-centric health center.

The Trevor Project: https://www.thetrevorproject.org Mental health help for the LGBTQ+ community.

10 Nonprofits to donate to during Pride Month (and beyond!): https://www.moneygeek.com/financial-planning/lgbtq-charities/

8 Portland LGBTQ+ Non-Profits: https://www.wweek.com/culture/2019/06/12/eight-portland-lgbtq-nonprofits/

I’m going to try to keep this neutral; however, as you can see from the title, I think (as do many Americans) that the rights of transgender children and teens to access gender-affirming care is not political. How it became political is beyond me, but I have a feeling it’s because Republicans were looking for a divisive issue, and found it: the transgender minor’s access to the medical care that they want. Or to use the bathroom they identify with. Or to have the pronouns used that they want used. Or to use the locker room that they identify with.

Transgender children are being used as political pawns to garner votes for this upcoming presidential race, and that’s disgusting. DeSantis - who is expected to deliver his intent to run for president sooner rather than later - declared that in Florida “We’re not doing the pronoun Olympics.” That same day (about 5 days ago), he signed a bill, correctly referred to by LGBTQ+ advocacy group Equity Florida as the “slate of hate”, that expanded the “Don’t Say Gay” law to prohibit the discussion of gender identity, use of proper pronouns, and/sexuality from K-3 to Pre-K - 8th grade. Later tweeting:

“Florida is expanding Parents’ Rights in Education to cover grades pre-K - 8. Teachers of young children and tweens should be focused on reading comprehension - not gender fluidity and pronouns.”

It’s too bad there aren’t any books left in Florida libraries after the Governor-ordered book banning. (Oh, sorry, book review) Hard to focus on reading comprehension if there aren’t any books to read.

The legislature in the following 19 states have banned gender-affirming care for transgender minors (under age 18):

Alabama

Arizona

Arkansas

Georgia

Florida

Idaho

Indiana

Iowa

Kentucky

Missouri

Mississippi

Montana

North Dakota

Oklahoma

South Dakota

Tennessee

Texas

West Virginia

Utah

Another 8 states have laws being considered. (Including Oregon! I’ll have to look into that.) Children are not pawns. Vote, donate to GLADD, PFLAG, the ACLU, and write to your representatives telling them how much you support trans kids and their right to live their lives in peace, and receive the medical care they want and need. Need help? Just click on any of the links below!

Show up for our kids. Don’t let them drown or disappear. (Also, I don’t want to have to move to New Zealand, and, yes, I’ve already started looking up ‘Most Trans-friendly countries’.)

Resources

Human Rights Campaign: https://www.hrc.org/resources/attacks-on-gender-affirming-care-by-state-map (Map showing state-by-state position on gender-affirming care for minors)

PFLAG: https://www.hrc.org/resources/attacks-on-gender-affirming-care-by-state-map Queer rights advocacy group

GLADD: https://www.glaad.org Huge media force in the LGBTQ+ community.

ACLU for Transgender Rights: https://www.aclu.org/issues/lgbtq-rights/transgender-rights

Did you know that 1 in 26 people will develop epilepsy in their lifetime? That’s not a small number. If someone told me that I had a 1 in 26 chance of being shot when I walked out of my house on any given day, I’d put on armor. (You can’t ‘protect’ yourself from getting epilepsy, but you know what I mean.)

So, my question is, for something so common, why aren’t more people talking about it?

It’s the 4th most common neurological condition in the United States.

It’s associated with substantially higher deaths than the population as a whole - SUDEP (Sudden Unexpected Death In Epilepsy) being the most common cause, and researchers predict that certain kinds of epilepsy can shorten life expectancy by 10 years.

In 2012, the annual direct medical cost of epilepsy in the U.S. was $9.8 BILLION. I’m sure a decade later it’s probably doubled. And, I can believe that. I have to fight my insurance company year after year for them to cover the medications that I need just to live a ‘normal’ life.

So, let’s talk about it. I’ve written a whole book where the protagonist has epilepsy, and I still felt nervous using the word ‘epilepsy’ when pitching it to agents. I tried to emphasize that it wasn’t just an ‘epilepsy book.’ Looking back, I wonder why? Now, after doing interviews, pitching in real time, running a support group, and being an active advocate for epilepsy, I understand:

For some bizarre reason, there is still a stigma attached.

It’s hard to undo centuries of misinformation and misunderstanding of seizures. No, people with epilepsy are not full of demons. People with epilepsy are not mentally ill. (Although mental health can be affected by epilepsy for a number of reasons.) People with epilepsy are not dumb. They can hold high-pressure jobs, many drive, but as it is an invisible condition/disability that can be controlled with medication, many people who have epilepsy don’t feel the need to disclose it or want to because they are afraid of the consequences. And that fear is justified, as we live in a society where the majority of people still think that we can swallow our tongues, and that all seizures require a hospital visit.

Look around your office, the coffee shop you are in, the next meeting you attend, and count the number of people there. It’s not hard to be in a room with 26 people. So, learn seizure first aid, buy books that include characters with epilepsy, attend epilepsy fundraising events, donate to epilepsy research.

Let’s stop the stigma and open the conversation. It all starts with a little education.

Resources

13 Common Epilepsy Myths, Debunked: https://health.clevelandclinic.org/13-common-epilepsy-myths-debunked/

Seizure First Aid: https://www.cdc.gov/epilepsy/about/first-aid.htm

Ideas on How to Fundraise for Epilepsy Research: https://www.epilepsy.com/volunteer/fundraising

Epilepsy Research Labs: https://my.clevelandclinic.org/research/neurological/epilepsy (Cleveland Clinic. Contact information on page.)

https://epilepsycenter.ucsf.edu/research-ucsf-epilepsy-center (UCSF Epilepsy Center. Browse trials and contact doctor on page directly!)