You know Greg Grunberg. He’s a hilarious Twitter dad, and a man-about-town in a ton of movies you love. For Star Wars fans, he’s the guy who did the recon on Starkiller Base, flying his X-Wing fearlessly alongside Poe Dameron in The Force Awakens. But Grunberg is fearless about another topic too: epilepsy. His oldest son Jake was diagnosed with epilepsy years ago, and after wading through a vast sea of ignorance on the topic, Grunberg decided to collect some very valuable real-world recon on the topic and share it with parents and caregivers worldwide.
Fatherly caught up with Grunberg recently to talk about his foundation, TalkAboutIt.org. Plus, we picked his brain about what fathers can do to stay happy and avoid being that annoying guy who never asks for help.
Tell me a little bit about why you founded TalkAboutIt.org
Our oldest, Jake, when he was seven, he started having, what we came to learn, were seizures. We had no idea. He would stare out in space for a second and stare for five seconds. We thought he was ignoring us and we kind of reprimanded him. And then when we were at his seven-year checkup, we told the doctor, “Oh, he’s kind of staring off a little bit.” And the doctor said, “That might be seizures.” And that began our whole journey with this.
Epilepsy is a tricky one because it doesn’t present itself the way another condition might, where it’s obvious, and you want to be careful. It’s all about just normalizing and controlling the episodes, the seizures. Jake is 22 now, but back then, you just looked for anything and everything to control those seizures. So we went to talk to this doctor and then that doctor. Finally found the right doctor and the right combination of medication and therapies.
What can parents do?
It’s all about talking, it’s all about awareness. It’s all about knowing what’s out there, talking to other dads. I started to talk about it at work. And, And, through talking to other people that are in this, that are dealing with this, I found out about VNS Therapy, which stimulates the Vagal Nerve and can prevent seizures before they start or stop them if they do. It’s hooked up to the Vagal Nerve through a small device, placed under the skin of the chest.
What is the big misconception that parents have about Epilepsy?
Well, number one is that they can’t hold a normal job, they can’t be in a normal classroom. People are afraid of labels, that’s the biggest thing for a parent. So, phrasing is everything. We hate the term “Epileptic.” Jake is not something, he has something, he has power over that. He has Epilepsy, Epilepsy doesn’t have him. But a lot of parents, they’re in denial. All that does is, it shuts you off to meeting the best doctors, seeking the best therapies, getting the best medications. Everybody’s got something. You know? High cholesterol, asthma, or whatever. No one should ever be ashamed of having either having something, or your child having something, or whatever. Deal with it. Really, that’s the biggest stigma that I’ve seen.
How do those stigmas show up in real life?
People say they understand Autism or any other condition, but until you’re really in the thick of it, you don’t truly understand it. When Jake would have seizures people would run away. They wouldn’t know what to do, they wouldn’t help him, they were scared. At school, or on the playground, or wherever, people would run away. People are afraid today because we’re such a litigious society. “Don’t touch him, you might hurt him more,” or whatever. There’s common sense things that the more people know, around your child, what to do or the possibilities of what could happen, the safer your child can be.
Why is it so hard for dads to admit when there’s something wrong?
If you and I are driving and we don’t have directions, we’re not going to stop and ask for help, we’ll figure it out. “I’ll figure it out! I’ll figure this out! No, no, this street up here. It’s got to lead to this.” We are the worst, dads. We’re the worst in that way. But, the truth is, if you throw up the white flag and start asking questions of your doctor. Start asking questions of other people that are around, you’re going to find out about these other treatments and these other things that can help your situation.
How does that surface in your work with your foundation?
Even when I go and I talk and I do an in-service, I’ll go to the school and I’ll talk to teachers. They’re like, “Oh, I’ve seen a kid have a seizure, I know what’s going on.” And I’m like, “So here’s what happens,” and I tell them how to handle the seizure and what to expect. And nine times out of ten they’re like, “Oh, I had no idea.”
It’s that same dad thing. We want to be the ones that know everything and handle everything without help. It’s just not the case with any condition, let alone epilepsy. I learn so much when I talk to other dads.
You have a pretty impressive career. How have you balanced a career and family?
I’ve always found that if it feels like a job, I’m never going to make as much money or be as successful as I could be if I’m truly invested and my whole heart is into something. It’s always going to pay off if it’s your passion.
Family first, of course. But, just look around you and the things that you’re passionate about. How to balance it, that’s the hardest thing in the world. Especially when you have a child with special needs, that’s really hard.
The other thing is, don’t be afraid to lean on your spouse. And, if you’re divorced, if you’re a single parent, don’t be afraid to lean on a relative, lean on a father, lean on a friend. Because you need it, you really need it. You can’t do it alone man.
How can dads make sure they are fun dads? It’s easy for you, you’re in Star Wars…
Ha! I mean, if there’s an action figure of you, you’ve got cred with your kid. But I’m just lucky, with what I do. But, I was always the guy on the ground with my kids playing, having fun, engaged with them. You can’t talk to your kids like they are other adults. Don’t get in the habit of that. When the kids are tiny, and they’re young, it’s so great to just. Look at the fun they’re giving you, jump into their fun. If they’re in a ball pit, jump in the ball pit with them. You know? When do you get a chance to do this again? Don’t try to make your fun, fun for them.
You’re going to blink your eyes and those days are going to be passed.
Greg Grunberg is currently starring in A Star is Born, in theaters now. He’ll reprise his role as X-Wing starpilot Snap Wexley in Star Wars: Episode IX.