A question for the LGS (Epilepsy) Community

If your or your loved one’s experience living with this condition were a book, what would its title be and why? And what would you name the chapter you are currently in?

Answers from the Community

It might be titled “My Life as an Epileptic” and this chapter could be “Living Day-by-Day in the Unknown.”

The title of the book would be something to do with hope because my daughter has lived with LGS undiagnosed for the first 22 years of her life, or excuse me, for 22 years of her life, and that with the proper medication treatment, there is a possibility of having some kind of normal life for her.

“Choosing to Dance in the Rain,” I feel like we have done the best we can at making her life fun and joyful, regardless of all of her difficulties. I think we would probably be coming to the end of her book because while I have no idea how long she’s going to live, the journey to get to the place of acceptance where we’re at took a long time, and I feel like that’s the ultimate goal is to be at. And so I’m sure we still have a few chapters left in us, but I think we’re coming to a nice bow at the end wrapped up of her story.

A book? Let’s see. How about, “My World Has Changed in the Past 17 Years,” and, I guess, “Where to Go from Here,” and probably Chapter 17.

I think our title probably would be “Determination.” He has the most amazing work ethic and has overcome everything that they ever said he wouldn’t do. They said he wouldn’t ever breathe on his own and he does. And they said he would have a G-tube and never would eat, and he does. They said he would never talk and although he only has a few words, he is talking. And he makes lots of sounds that is definitely communication. And they never thought he would sit up on his own, or walk, or anything like that and although were not walking independently now, we are walking with the assistance of a walker. Which is amazing, something that we didn’t even, a year ago, think would be possible. And the chapter that we’re in right now, I think probably would be called “Setbacks” just because of the pandemic. We lost quite a bit of resources as far as our therapy teams and things like that. He typically receives PT and OT, as a co-treat, and they weren’t able to do that for a long time. And trying to do speech therapy via telehealth, for a kid that is also visually impaired, and doesn’t understand what a tablet is, is really difficult. We’re looking forward to being back in person for all of our therapies. I’m more consistent with them, especially those through the school district.

This is a good one. I thought about this before I called in. I think her title would be, “My Life Is Still Beautiful.” Because it truly is. My daughter wouldn’t tell you that she’s not happy. My daughter wouldn’t tell you that she feels sorry for herself. She wouldn’t tell you… She doesn’t say to people, “Oh, this is wrong with me,” instantly. She just is. She just lives. She’s just happy. She has this beautiful way of her where she doesn’t ever focus on negativity. She doesn’t ever focus on her condition. She has fun. She loves to dance. She’s really funny. And so for her, it would just be My Life is Beautiful. She doesn’t have darkness over her at all. What would you name the chapter you were currently in? Right now it’s a tricky time because of everything with quarantine. Everything has turned out to be online or Zoom or she would play video games with her friends. And because of the gap in their cognitive ability, what has transpired is that they don’t really like to play with her, because she doesn’t play well enough for them, or she doesn’t understand what they’re asking her to do. And so they sort of stopped playing with her. And so I think that’s very difficult right now, for me. And so her current chapter would have to be, I don’t know if I could say it first, but it would be “FU 2020” just because it brought some new things to light. And I guess it’s a kind of a good thing, too, because it was bound to happen. They were bound to grow up. They were bound to even either get closer or grow apart. And unfortunately, with some of them, she’s grown apart, which it’s hard because they’re her school friends. She was in school since kindergarten. This group of kids has grown up with her and really loved her. And so now they’re going into junior high and so there’s a different mindset. And it’s not the best, but it’s where we’re at, and it’s what we’re dealing with right now. So, yeah. Just quarantine 2020 sucks for that reason, and that would be my current chapter name.

The only title that I could come up with was, “The Harrell Sht Show,” which was funny. But we, yeah, it’s just crazy here all the time. And we live with it and that’s just who we are and, but yeah. “Welcome to the Sht Show.”

The title would definitely be “The Roller Coaster,” and the current chapter would be called “The Uphill Climb” because right now we’re having a large number of seizures and it’s that exhausting process of trying to figure out what regimen of medicines is going to control his seizures at this point. I would call it “The Roller Coaster” because that’s how our life is. We have good periods and bad periods. It feels like you’re constantly on that uphill climb of trying to get the meds and everything right, and then you get it right and you get that downhill roll and the pleasant period of thrill of having good seizure control, and then you hit another uphill climb.

I guess I don’t really know what I would name my book. I guess maybe “Chronic Illness: The Roller Coaster Ride,” because not only do I have epilepsy, but I have a lot of other conditions. I guess the current chapter would probably be “The Downhill Slope” because none of my stuff is managed well right now.

This one’s a bit harder. I would name it “Alice 2020.” I would name that based off Lewis Carroll based off of the experience and how it feels when this occurs. And I would name this chapter in my life “Finding Peace With the Mad Hatter.”

If I had to name my experience living with epilepsy as a book, I think I would title it, “From Shock to Flourishing”, which sounds weird, but the reason why is because when I was first diagnosed, it was a complete shock. It came out of the complete blue. There was no one in my family who had epilepsy, and it was diagnosed after one random seizure when I was 13. So it was a shock, not only to myself, but to everyone. And so, over time, I think, as the word indicates, flourishing, I’ve learned to flourish, and I’ve learned to live with epilepsy and not let it define me and live my life in a way that doesn’t limit me, but also protects me from having any possible seizures. And I would say the chapter that I’m living in now would be “Managing.” I wouldn’t say that I’m necessarily flourishing overall, but I would say I’m managing. I’m not having any seizures. I just graduated college. I’m about to go to law school. But I’m managing. Some days are harder than others. Sometimes these migraines are just absolutely debilitating, and on a lot of days, it just feels like all I can really do is manage. All I can really do is function. And I’m hoping that my next chapter can be something that’s more than managing, but overall, that’s what I would title the book and the chapter. And I’m definitely very grateful that my epilepsy is as controlled as it is because I know that it could be much worse, so I’m very grateful that this has been my experience so far, and I appreciate anyone who does research on epilepsy because it’s definitely very important.

These are amazing questions. I would call it, [PII redacted] “Keep Smiling On.” And this chapter is “The Teenage Storm.” Wow.

I thought this question was funny because I did write a book that was published last fall that’s called “Our Time to Dance: A Mother’s Journey to Joy,” but actually today I think the book would be titled “On the Road Again: My Journey to Hell and Back,” and my particular chapter would be titled “Idling on the Side of the Road.”

“With Epilepsy Comes the Storm,” I think, would be the condition that I would think of or what the book title. For epilepsy and living with the condition comes into that. I tend to think of epilepsy, it’s like almost having a malfunctioning electrical storm in your mind. And I think that the chapter that I’m currently in is, “Stormy but Smooth Sailing” in that I’ve learned to cope with having epilepsy, I’ve learned to deal with the ups and downs. And the oceans is still kind of super choppy and I’m still dealing with a lot of chaos and that in life, but I’ve learned to take the sailboat up and down through all of those issues. So I think that that’s the best way I can describe it. I know, “A Gathering Storm” is something that I’ve heard a lot of people say. I think a lot of people said that it’s like having unpredictable thunderstorms, and some days can be sunny and some days you’ve got a massive electrical storm in your mind. That’s one of the best ways I think I’ve heard to describe the uncertainty of living with epilepsy.

If I had to have a book that was titled for my condition, it would be “Living with Epilepsy” and the chapter I’m in now would be “Starting a Family and Showing Everybody That You Can Succeed,” I think would be my chapter because I have got a college degree, I am in a good-paying job, me and my husband are starting fostering children and we have started our family and bought a house. So, I would say “Starting That Family and Showing Everyone That We Can Do Things, Even If We Have a Disability.”

Oh man, I would probably name this book … “The Untold and the Unknown Journey.” I mean, that’s what a rare disease is. It’s something that nobody knows anything about and it’s something that is often forgotten and never spoken about. And the chapter that I would write that we’re in right now is, I would probably label it, “Out Loud and on Purpose.” I’m pretty damn vocal about what’s going on right now with my kiddo. I’ve been very vocal about the discrimination and the oppression and the lack of societal accommodations towards my kiddo. And, this is the chapter where I want things to change and I want kiddos with disabilities, I want anybody with disabilities to be treated better, to have better accommodations, to have societal changes. And I’m not going to stop. And I want it to be better. Honestly, the biggest thing I’ve learned in this community is that the only people that are going to make these changes are going to be the parents. And we’re freaking exhausted and we’re tired and our kiddos keep us up all night. And, we talk about chronic fatigue. You know, that’s real thing and that is something that we deal with. And, I’m not going to stop. And I’m going to keep on going because I have a purpose and I’m not going to be quiet about it. My kiddo’s doing really well right now, but tomorrow that could be different. And so I need to prepare for that. And it’s not just within this microsystem of the family. Like this is huge. This is more than that. It’s another one, a macro system, it’s on so many different levels and it needs to change.