Podcast: Firsthand Look at Caregiving in Chronic Conditions with Star Wars’ Greg Grunberg

Guest Bio

Greg Grunberg is best known for his role as X-wing pilot Snap Wexley in “STAR WARS,” as well as “STAR TREK,” “A STAR IS BORN,” and alongside Al Pacino in the Barry Levinson film “PATERNO.” In addition, he has many memorable series regular roles on shows “HEROES,” “CASTLE ROCK,” “LOST,” “ALIAS,” and “FELICITY”.

Currently, Grunberg stars alongside Kevin Smith in the cult classic “MAX RELOAD & THE NETHER BLASTERS” as well as the much beloved “BIG ASS SPIDER.”

Grunberg has written pilots & films and co-wrote the graphic novel series “DREAM JUMPER” for Scholastic. Book 2 is available everywhere now.

Grunberg hosted and produced, alongside Kevin Smith, the pop-culture talk show “GEEKING OUT” for AMC and currently is a staple on the popular gameshow “25 WORDS OR LESS.”

He has a few podcasts: “TALK ABOUT IT,” “VESTED INTEREST,” and “AN ACTOR, COMEDIAN & A MUSICIAN WALK INTO A BAR.” Currently, he is filming his popular YouTube series “THE CAREGIVER“ for the epilepsy community.

As a drummer, Grunberg started his celebrity rock band “THE ACTION FIGURES“ (TheActionFiguresBand.com) with fellow actors Jesse Spencer, Adrian Pasdar, Jack Coleman, and Scott Grimes, benefiting TalkAboutIt.org, his foundation to raise awareness for people with epilepsy as his eldest son has the condition.

Inside Mental Health Podcast Host

Gabe Howard is an award-winning writer and speaker who lives with bipolar disorder. He is the author of the popular book, “Mental Illness is an Asshole and other Observations,” available from Amazon; signed copies are also available directly from the author.

Gabe makes his home in the suburbs of Columbus, Ohio. He lives with his supportive wife, Kendall, and a Miniature Schnauzer dog that he never wanted, but now can’t imagine life without.

To book Gabe for your next event or learn more about him, please visit gabehoward.com.

Episode Transcript

Producer’s Note: Please be mindful that this transcript has been computer generated and therefore may contain inaccuracies and grammar errors. Thank you.

Announcer: You’re listening to Inside Mental Health: A Psych Central Podcast where experts share experiences and the latest thinking on mental health and psychology. Here’s your host, Gabe Howard.

Gabe Howard: Welcome, everyone. I am your host Gabe Howard and calling into the show today we have Greg Grunberg. Greg is best known for his role as X-Wing pilot Snap Wexley in Star Wars. Currently, he is shooting his popular YouTube series, The Care Giver for the epilepsy community in honor of his son Jake, who lives with epilepsy. Greg, welcome to the show.

Greg Grunberg: Oh, thanks for having me on. I’m so happy to be here.

Gabe Howard: Greg, speaking as someone who lives with bipolar disorder and is a mental health advocate, one of the constant struggles is the role of the support staff. I’m making air quotes. The parents, friends, family, the people around us who help us reach recovery. They’re of vital importance. Now, it seems like in your world, in the physical health world, another air quote moment. They’re called caregivers. Now in the mental health world, it’s a hotly debated subject, what they should be called. Do you find that people living with epilepsy take issue with their support staff being referred to as their caregivers?

Greg Grunberg: No, I don’t think so. I think it’s very well accepted. And when you think about it, we can be caregivers just as parents to our kids, as siblings, as partners. So I think the term caregiver, it does imply that you’re helping someone that needs help. So that may be where the stigma lies. But I think I think in general; it’s definitely widely accepted. It’s funny you mentioned in the mental health world, I guess it’s just more of a stigma in that world. And what do you think drives that?

Gabe Howard: I think the big driver is that people in the mental health world are often looked down upon like we’re not in control of our own destiny and therefore our caregivers tend to get credit for our accomplishments. And I didn’t want to assume that that wasn’t happening. Over in the epilepsy community. Does that ever happen where, like your son will accomplish somebody and everybody will bypass your son and look right at you and be like, Oh my God, Greg, you did it? And you’re like, My son is standing right here. Does this happen where people bypass your son and give you all the credit? Because this does, in fairness, happen a lot in the mental health community.

Greg Grunberg: Yeah. It’s interesting you say that because now thinking about it, I guess it does at times, but the majority of it is attributed to Jake and just everything that he that he does. And I don’t think any of us in the epilepsy community have a problem with that, because every day is a major accomplishment, every day, every waking up and not having a seizure. Just it’s a constant battle. Because if you’re talking about a seizure, that can strike at any time, So normal, everyday activities are always thought of. And in preparation of any activity, you’re like, Well, what if I have a seizure when that happens? But as far as getting credit, the hardest part, and this is something I’m learning in the series, The Care Giver, is accepting credit as a caregiver because it’s expected. As a parent, what am I supposed to do? This is what we do. My wife and I, we care for all of our kids. And Jake just needs a little extra care sometimes. And when someone tries to pat us on the back or give us an attaboy or say, you’re the greatest people and you’re the greatest, how do you do it? It’s like, what are you talking about? This is what we do. I do this for my other boys, too. They don’t have the same type of issues. But if my son needs to be driven to a baseball game and it’s out of state, I’m going to do that.

Greg Grunberg: This is what it’s all about, being a parent. And it’s tough. It’s tougher when there’s a medical condition attached. But again, it’s what you should be doing and it’s hard to accept that. Now, having said that, The Care Giver series is all about patting somebody on the back, all about giving them, giving them that recognition and taking them away from their situation for an hour and just letting them enjoy. In one case, it was John loved cars and so I took him to this really cool car spot, just things that a caregiver would normally do for themselves if they didn’t have they didn’t have to spend that extra time that they might want to spend on themselves for a hobby or whatever, doing what they do as a caregiver. So it’s hard for them to accept even that level of thanks or appreciation or time for themselves. And I use the analogy of when they say you’re on a plane and you need to put the mask on yourself before you put your mask on your child or someone sitting next to you. You really need to take care of yourself physically, mentally, as a caregiver. You need to be okay to take care of the person that you’re caregiver for. So it’s a balance. There’s no one way of doing it. Everyone’s got a different situation. But I’m certainly learning about how these people balance their life, how they take care of the ones that they love and also take care of themselves.

Gabe Howard: You know, Greg, when you talked about the stigma of being called a caregiver and mental health, I want to put the focus back on those who support people living with mental illness because they’re not getting those attaboys. They’re not getting those, Oh, my God, you need to take time for yourself. They’re getting the you need to get your child under control. You need to control your spouse. You need to talk to your friend. They’re getting a lot of pressure to intervene and correct the situation where it sounds like over in your community, they’re getting a lot of, hey, you need to take some time for yourself and you’re doing such a good job and you’re amazing. Is that is that a fair statement? Remember, I don’t live in the epilepsy community, so I don’t want to make assumptions. But it sounds like people are much more supportive to the, quote-unquote, support staff over there.

Greg Grunberg: Yeah. I mean, you know, again, I’m not in your world, you’re not in mine. So it’s it’s really interesting hearing you say that, because that is so absurd and ridiculous. I have the people all around me that are in the mental health community, and that’s a shame. It’s terrible because you hit it on the head. Yes. In our community, we definitely recognize and appreciate others and just keep telling them, keep going. There’s so much support out there. That’s what my podcast, Talk About It, is all about, I have TalkAboutIt.org. And also, obviously The Care Giver. It’s all about support and letting people know they’re not alone. I think with mental health, which drives me crazy when I hear this, the fact that it’s ignorance, people just don’t understand it. And because they don’t understand it, they throw out comments like that that are just not fair. Again, I’m just speaking my personal opinion. I’m not in the mental health space, but that is ridiculous. And people that don’t understand what’s going on shouldn’t throw stones. I mean, it’s just it’s absolutely absurd. But it’s hard thing, I think, with any condition, right? If it presents itself in a visual sense or presents itself immediately through, you know, if you see someone in a wheelchair or you see someone that looks a little different, immediately, you can go, Oh, okay, I get it.

Greg Grunberg: And you may stop and stare, which is wrong. But if you, if you have compassion and empathy, you’re going to ask questions. Hey, why did you get in the chair? Why are you using crutches? Blah, blah, blah. Epilepsy and seizure disorders are not like that. So there is a lot of misunderstood stuff. Like you’ll see somebody mumble. You’ll see somebody have a tic or they’ll have a little seizure or they’ll zone out for 5 seconds, 10 seconds, 30 seconds. And I’ve heard comments. People think they’re drunk, people think something’s going on with them. And then they’ll make a joke or you’ve always heard the what do you that’s a crazy dance you’re doing or whatever. It’s just stupidity. But it comes from ignorance and not understanding what’s going on.

Gabe Howard: When we talk about caregivers in general, whether they’re on the mental health side or the physical health side, where these worlds really come together and collide is that caregivers believe that they have to be on 24/7. I call it the superhero syndrome. They believe that they can’t take a break. The cape always has to be on. They’re the only one that can handle it. And if they sit down for even a moment, catastrophe will happen. And of course, this is no way to live. It’s no way to manage your own mental health. In your series, The Care Giver you talk with, with so many people who they feel this way, they may not use those words, but they really feel like they have to be on call 24/7. Does this wreck their mental health? What are you seeing? What gets cut out of the show?

Greg Grunberg: You know, you are incredibly observant and spot on because that is absolutely right. I just use my personal situation. My wife and I, Jake is incredibly independent. We’re very lucky. He’s doing very well. But we still, in the back of our minds at every given moment. You know, Jake has a great job. He goes, he leaves the house, he goes to his job. We’re always thinking, oh, we should be there. If something happens, I hope somebody is right there with him and knows what to do. And that’s why we talk about it. Obviously, everyone in this job knows what to do and everything, but there is still always that lingering thing where I’m not doing enough. I could do more and I and I could completely understand that that same, you know, that same situation, that same feeling in the mental health space. Again, it’s not my space, but yes, in the epilepsy world, seizure world, the anybody that’s dealing with any kind of a neurological condition, their caregiver wants to be there all the time. Yet at the same time, I think this is what you were getting to, that they don’t say it in so many words. We all talk about independence. That’s the most important thing. That’s the ultimate thing. You know, we use 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 seizures are something that will if you 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. But I think you’re absolutely right on with that.

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Gabe Howard: And we are back with Greg Grunberg, host of the popular YouTube series The Care Giver. I want to talk about self-care. I believe that self-care is important for every single human on the planet. But why is self-care so important for caregivers?

Greg Grunberg: Well, I mean, there are so many things that are out of our control and all we want to do is control these things. There are a lot of things that are in our control. On the caregiver side, I mean, it’s just the basics. You know, I mean, right now I’m trying to lose weight. It’s like a constant battle for me. I know I’ve got to be healthy. My mind’s got to be right. You know, you just have to you’ve got to take care of yourself as a whole, just like you normally would, to be able to take care of others and handle things, because this is a rollercoaster. You know, my wife and I had this picture up on the wall. It’s a quote from Willy Wonka and it 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 a condition that could strike at any time. If you’re healthy, you’ll be prepared to deal with that stuff.

Gabe Howard: It’s always fascinating to me when I when I talk to folks like you, Greg, because everything that you described to manage epilepsy is exactly how you manage bipolar disorder or major depression. You know, getting sleep, diet and exercise, paying attention to your body, I never, ever understand why mental health and physical health are separated out. And we don’t just talk about health, but this is a mental health podcast. So we have to stay on mental health. Are there mental health challenges in your world that are exacerbated because of epilepsy?

Greg Grunberg: Uh, that’s a great, great question. And yes, I think we are perfectly aligned in that when these things occur, when you have an episode, when something strikes you, whatever your condition. Right? Like epilepsy, seizures. My wife and I will absolutely start screaming and yelling at each other over stupid things. So we’ll argue. Jake, will get depressed. He’ll get bummed out. And it’ll be because we constantly have this mile marker where you go, Hey, I’ve been two months seizure free or I haven’t had a seizure in six months or a year. We shouldn’t be doing that. At the same time, you do want to feel good that what you’re doing, the routine, you have, the medication you’re on, the therapies you’re doing, it’s all working. I’m doing the right thing. You need to recognize that and keep going. But when something happens, when an episode happens, you get depressed, you get angry, you get pissed off. The mental health aspect comes in a big way. 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. We learn from him every day. There are moments that Jake will wake up, he’ll have an episode in the morning. They’re very rare right now, which is great. But, if, if it was me, I’d bury my head in the sand and say, okay, I’m done for the day.

Greg Grunberg: And Jake just isn’t like that. And we learn from him. He’s unbelievably my hero. I mean, I really believe this. I learn from him. And maybe it’s the fact that he’s just had this his whole life and he doesn’t know any better. But still, he gets upset. Trust me. He gets bummed, he gets angry, gets upset, gets depressed and all that. But more likely, in more cases than not. I see him just rough it off and go, Hey, I’m going to continue. This is my life. This is it, I’m not gonna let that stopped me. I mean, there are examples. He was playing Little League once and he hit the ball and a triple, great play. And when he got to third, he was hyperventilating. This is when he was very young, but hyperventilating, and he had a full seizure on the field. And my wife and I took him and we took him in the car. We live about half a mile from the field. And the whole time in the car, he wasn’t talking. We were like, Oh, boy. And we’re like, It’s okay, Jake. We kept saying, Don’t worry about it, buddy. And we get home and I look at Elizabeth, she looks at me, Jake gets out of the car, slams into a run to the house, and now we’re the parents looking at each other going, Ah, who’s going to take this? Who’s going to deal with this? Who’s going to be the lead on this to talk to him and get out of the car? And before we can even take a step toward the house, he’s already got new pants, new baseball pants.

Greg Grunberg: And because they were filthy and he’s like, let’s go. I’m going back. I’m finishing the game. And we look at each other like, What are you talking about? What are you talking about? You’re 11. Like, No. And he goes, No, come on, let’s go. He never lets it stop him from doing anything. Sometimes it’s to a fault where I go No, you can’t go up that rock wall. You just had a seizure, even though you’re strapped in or whatever, an amusement park, you got to take it easy. And as a parent, you got to protect your kids. But I just learned from Jake so much that he doesn’t let this condition stop him. 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. You know, my wife is a rock, She is a rock.

Greg Grunberg: She loses it, I lose it. But I’m there for her. She’s there for me. We also have two adult. My other boys are incredible and they have learned how to deal with this. They are an incredible support system. So I guess what I’m getting at is that don’t be afraid to let people be that support system for you to have somebody that you can call them. My best friend in the world, I called him at the worst moments when an episode has happened or Jake’s been in surgery or whatever, and he’s just there for me and he’s not there for me, like with pity or anything. He says, All right, good. You got that out of your system. Let’s go. You’ve got to be the rock. You’ve got to be the solid guy. And we cry and everything. But then he’s there for me to get me locked back in. All right, Take a deep breath. Everything’s going to be okay. And you just need that. And you need to be able to accept that. Don’t be afraid to have and accept people that love you and are there for you because you can’t do it all. You know, if you’re the patient and you’re supposed to be your own support system, I don’t know how people do that. So accept a caregiver, accept that love and that support.

Gabe Howard: That is excellent advice. I want to cosign that advice. But we also know that that’s easier said than done. What advice do you have for caregivers who are reluctant to let go? Who don’t know how to ask for or accept help? What advice do you have for those caregivers that just aren’t sure how to prioritize their mental health and take a step back?

Greg Grunberg: I think that those caregivers really need to look at the people that are around them, because I think that’s a direct reaction to others looking at them as less than and saying, oh, well, they have a problem, it’s that whole, you know, when you laugh, the world laughs with you. When you cry, you cry alone. I don’t buy into that. I just think if somebody doesn’t accept it, certainly doesn’t understand it, whether it’s a family member or whatever. Move on. That’s their problem. That’s not your problem. Know that everybody’s got something and don’t ever turn away from people that want to help you and accept it. It doesn’t make you any less of a person. 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 that is a weakness. And you just need to know that nobody’s perfect and you’re never going to do it right. It’s always going to have flaws. Your life, how you care for others. How you care for yourself, and move on. Know there’s another movie where there’s a guy driver and he gets in. He’s about to run a race and he grabs the rearview mirror and he rips it off and he throws it away. And his co-driver looks at him and says, Oh. And he goes, What’s in front of me is not behind me. And it’s like, you can do better every day, or you can just 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.

Gabe Howard: Greg, thank you so much for taking the time to do this. Where can folks find The Care Giver and are there any last bits of wisdom that you want to pass on? Because you talk to a lot of people and of course, this is your lived experience as well. And I, I can’t help but think that you have a wealth of knowledge that I just don’t have the right question for.

Greg Grunberg: That is so not true. I’ve been doing a lot of press and a lot of interviews. And I’ve got to tell you, your questions are so spot on. And they go right to the heart of what we’re trying to do. And I really honestly thank you. I don’t say that a lot. And I just encourage people to go to TheCareGiverSeries.com, TheCareGiverSeries.com. Go there and you will find episodes. Hopefully, you’ll connect with it. You don’t have to be a part of the mental health community or the epilepsy community or any of that physical health community just to learn and have compassion and understand. Look, if you see someone have a mental health episode, you should know what to do and what not to do. And never shame, never blame. Understand. That’s what it’s all about in the physical health community. Same thing, you know. Just learn. Open up your mind. And if you see someone have a seizure, if you’ve seen an episode or you go to talk about it, or you 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. We all more than ever now in the world, we’re all just taking sides. We can’t take sides when it comes to mental health. We all have to be on the right side. We all have to be looking out for each other and understand each other. And so the conversations like this and the platform that you have, it’s just so invaluable. And thank you so much for having me on. I really appreciate it. And if anybody wants to follow me on Twitter, that’s where I’ll blast out the latest episodes or whatever. And that’s just @greggrunberg on Twitter.

Gabe Howard: Greg, thank you again so much for being here.

Greg Grunberg: My pleasure. Thank you.

Gabe Howard: You are very welcome. And a big thank you to all of our listeners. My name is Gabe Howard and I am the author of “Mental Illness Is an Asshole and Other Observations.” I’m also an award-winning public speaker who may be available for your next event. My book is on Amazon, or you can grab a signed copy with free show swag or learn more about me just by heading over to my website, gabehoward.com. Please follow or subscribe to the show wherever you downloaded this episode. It is absolutely free. And do me a favor, recommend the show to your friends, family, or colleagues. Sharing the show is how we grow. I will see everybody next Thursday on Inside Mental Health.

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