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| Not so long ago, in a galaxy far, far away, Greg Grunberg starred as X-wing pilot Temmin “Snap” Wexley in “Star Wars: The Force Awakens (Episode VII).” Now, he’s an author (of a bunch of books), a podcaster (of a bunch of shows), and the founder of TalkAboutIt.org. And most, if not all, of his work raises awareness for people with epilepsy, like his son, Jake.
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| In a recent interview with Healthline’s Gabe Howard, Grunberg opens up about managing his mental health while caring for Jake. Below, we share our favorite clips from their chat on topics like caregiver burnout, how to prioritize your well-being while supporting someone with a chronic condition, and some of the important lessons he learned along the way. |
| *This interview has been edited for clarity and length. |
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Self-care is important for every single human on the planet, but why is self-care so important for caregivers?
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| A: It's like a constant battle for me. I know I've got to be healthy. My mind's got to be right. You have to take care of yourself as a whole, just like you normally would, to be able to take care of others and handle things, but this is a rollercoaster. |
| My wife and I have this picture up on the wall … it's a quote from Willy Wonka which says, “Hold on tight. I'm not exactly sure what's going to happen.” And that's the way your life is when you're dealing with any kind of condition that could strike at any time. But if you're healthy, you'll be prepared to deal with that stuff. |
| Q: |
In your series, The Caregiver, you talk with so many people who really feel like they have to be on call 24/7. Does this wreck their mental health? What are you seeing? |
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| A: I’ll just use my personal situation. Jake is incredibly independent. He's doing very well. But my wife and I, still, in the back of our minds at any given moment, are always thinking, “Oh, we should be there. If something happens, I hope somebody’s right there with him and knows what to do.” Obviously, everyone in this job knows what to do, but there’s still always that lingering thought “I'm not doing enough. I could do more.” |
| In the epilepsy world, seizure world –– anybody that's dealing with any kind of neurological condition –– their caregiver wants to be there all the time. Yet, at the same time, independence is the most important thing. We say “seizure freedom.” “I want to be seizure-free. I don't want to have to deal with seizures anymore.” |
| It's a really tough thing because if you have epilepsy, it's always something in the back of your mind that could come back even if you're doing really well. So, you have to stay on top of keeping yourself healthy, doing the right thing, taking your medication on time, all that stuff. But it's something that never goes away in your mind. |
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| Q: |
Are there mental health challenges in your world that are exacerbated because of epilepsy? |
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| A: That’s a great question, and yes.
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| You want to feel that what you’re doing, the routine you have, the medication you’re on, the therapies you’re doing, are all working –– I’m doing the right thing. You need to recognize that, and keep going. But when something happens, you get depressed, you get angry, you get pissed off. |
| The mental health aspect [plays a big part], and we constantly have to remind ourselves that Jake has this condition. It doesn't have him. He has epilepsy. Epilepsy does not have Jake. It's a never-ending battle, but mental health plays a big, big role in it, and we just have to keep ourselves in check. And we constantly do that. |
| Another way is by having the balance. My wife is a rock –– she loses it, I lose it, but I'm there for her, [and] she's there for me. My other boys are incredible, and they’ve learned how to deal with this. They’re an incredible support system. |
| So, I guess what I'm getting at is don't be afraid to let people be that support system for you. Have somebody that you can call. Don't be afraid to accept people that love you and are there for you, because you can't do it all. Accept a caregiver. Accept that love and that support. |
| Q: |
What advice do you have for caregivers who are reluctant to let go? Who don't know how to ask for or accept help? Who aren't sure how to prioritize their mental health and take a step back?
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| A: Know that everybody's got something, and don't ever turn away from people that want to help you … accept it! It doesn't make you any less of a person.
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| You know, we all need some level of care in our lives. Therapy is an amazing thing. Just talking to friends, meditating, having time for yourself, all of that stuff –– none of them are a weakness. And you need to know that nobody's perfect, and you're never going to do it right.
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| You can do better every day, or you can continually do the right thing. Just know that you're doing it. You're doing a good job. And keep moving forward. Keep looking forward.
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| Q: |
Are there any last bits of wisdom that you want to pass on? |
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| A: You don’t have to be a part of the mental health community or the epilepsy community or the physical health community to learn and have compassion and understand. Never shame. Never blame. Understand. That’s what it’s all about. Learn. Open up your mind. |
| If you see someone have a mental health episode, you should know what to do and what not to do. If you go to TalkAboutIt.org or listen to my podcast Talk About It, you’ll know what to do when someone has a seizure. I mean, it’s a little thing. It’s just basic knowledge. But we all need each other. |
| Click here to listen to the full podcast episode. |
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