The Power of Friendship and Feeling Good with Jay Huguley
Film, TV, and theater actor Jay Huguley shares how losing sight in one eye led him on a journey to understanding the power of friendship, asking for help, and appreciating all life has to offer.
Show Notes:
Dr. Dan Kelly at Pacific Neuroscience Institute
About minimally invasive keyhole brain surgery
About Neurosarcoidosis
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[00:00:03] Welcome to Here for Me, a podcast about the power of choosing yourself. I'm Nicole Christie, and I'm honored to be here with you to share life altering stories, lessons learned, and advice from leading experts that will help you show up for yourself with the love, honor, compassion and encouragement you give to others. Because just as we say, I'm here for you to show we care for someone, saying “I'm here for me” to ourselves, is the best form of self-care. Today, I'm talking with Jay Huguley. Jay is a film, television and theater actor best known for playing David on AMC's The Walking Dead and Jimmy LeDoux on HBO's True Detective, opposite Matthew McConaughey and Woody Harrelson. Amongst his many film and television roles, he's also appeared as Will Branson in the HBO series Treme, as Whit Payton in ABC's Emmy Award-winning Brothers and Sisters, and in the Oscar-winning film 12 Years A Slave. On stage, Jay starred in the Tony Award winning play Rabbit Hole, and played the lead in Tom Stoppard's The Real Thing, both at Los Angeles's Skylight Theater. Given his storied career, you can imagine how a health crisis could bring everything to a screeching halt. In 2016, over the course of a weekend, Jay lost sight in his left eye. What transpired over the coming days, weeks and months, was an epic journey that's testament not only to the miracles of modern medicine, but to what Jay learned about advocating for himself, leaning on others, and tapping into both gratitude and vulnerability when he realized his life may literally depend on it. Jay, welcome to Here For Me.
[00:01:49] Jay: Hi, Nicole.
[00:01:50] Nicole: How are you?
[00:01:51] Jay: I'm really good. It's really good to hear from you.
[00:01:53] Nicole: Welcome. Well, you are here fresh off the coast of Maine. If I am understanding correctly. So you were out shooting and kind of been kind of been doing a little East Coast jet setting, from what I understand.
[00:02:06] Jay: Yeah. I was doing a movie called The Ghost Trap, which will be out next year. So I was in a lobster boat for a few days, which was pretty wild.
[00:02:14] Nicole: Dramamine, right? I saw your post about it.
[00:02:16] Jay: Yeah, I just took it. I was like, this will solve a lot of problems if they arise. So yeah, it was a really fun job, though.
[00:02:24] Nicole: Oh, that's incredible. And you're a consummate pro to get a step ahead of that because you just never know. It's an interesting story how you and I met Jay is in Los Angeles. I'm in San Diego. We're big fans of jetting out to Palm Springs for a getaway, which is about two, two and a half hour drive from here. And I think it was like early December of last year. I was at a hotel that we both love to frequent and sitting in the hot tub at about 9 p.m. And you came by and you're like, “Hey, can I join you?”
Jay: That's right.
Nicole: Which is how we met and talked about life and work and art and your career is incredible. You're an incredible human. I've so enjoyed getting to know you. And it wasn't until recently, though, that we were actually at a San Diego Symphony concert here at the beautiful Shell venue in San Diego. Folks if haven't checked that out, it's an absolutely gorgeous outdoor amphitheater. And you came down to see a concert and told me this incredible story about what you went through health-wise and what you learned from it. So I would love to just dive into that and help us understand what happened.
[00:03:28] Jay: I had just turned 50, and in August of 2016 I went to see a play with a friend of mine and during the play I kept covering my eye and then the other eye and I kept thinking, you know, my vision in my left eye is not exactly the way it was this morning. And it was a little blurry and a little loss of color. I just noticed like reds were muted. And I thought, ‘Hmm, I'm going to see my eye doctor.’ This is a Friday night. I'm going to see my eye doctor on Monday. I'll go see him. So I woke up the next morning and it was much worse and it was making me nervous. And then I did the dumbest thing you're never supposed to do, which is Google.
Nicole: Dr. Google.
Jay: Yeah. I mean, I really I can't stress enough how you shouldn't Google symptoms, but I Googled. Why would an adult male lose some eyesight and some color in one eye and just terrible things come up. So I was very nervous. I went to see my doctor on Monday morning and he didn't see anything. And I could tell that made him nervous because it was now clearly not my eye. So he sent me two days later to see a neuro ophthalmologist and he took some pictures of the back of my eye and my brain. And a few days later we found out that there were some small tumors in my brain, one which was leaning against my optic nerve, which was causing the problem.
[00:04:57] So I saw a lot of really smart people, a lot of really great doctors, and they all decided that we had to get it out. They put me on steroids pretty quickly. Intravenously, which brought my eyesight back to normal within a few days. The consensus was that most really scary things don't shrink from steroids so quickly. But there were still some other things on the list that we really didn't want there to be, and I just plotted my journey from there. So a lot of different doctors and landed a genius named Dr. Dan Kelly at St John's in Santa Monica. And I had surgery, which was super scary. The previous doctors that I had seen were going to do some very, very invasive things in terms of my brain and my skull and all those things. And the fourth opinion I got was Dr. Dan Kelly. And he said, “Nope. I'd go right through your eyebrow with something called minimally invasive keyhole brain surgery. I can reach it.” And that's what he did. He said, I can see you next Thursday. He said, the only thing about next Thursday's appointment is that I'm going to live stream it to 400 other surgeons from around the world that will be learning this operation. And I thought, okay, well, that's my opportunity, I guess, to be a little bit of service. And I got in the car and I turned to my friend [and said] “I think I got the job.”
[00:06:21] Nicole: The audition.
Jay: I won the audition. Yeah, they liked me. So, yeah, that's where it started. And then on September 26th, just a few weeks later, I had brain surgery.
[00:06:31] Nicole: And that surgery was how long?
[00:06:33] Jay: That surgery was 6 hours, which is too long for my sweet, old father who flew out here and who was sitting in the waiting room. My friend said he kept looking at them and saying “I'd like them to finish soon.” You know, it was supposed to be a lot shorter, but they did it. They got it, and they went straight through my eye. They'd even shave my eyebrows. So I just had like a Band-Aid over my eyebrow, which was really like living in the future all of a sudden. And then a couple of days later had a black eye. But that was about it.
[00:07:03] Nicole: So you had gone to a few doctors before you found Dr. Kelly. So what were they telling you that you would need to have done? And what made you continue seeking more opinions?
[00:07:15] Jay: Calm, sober-minded friends who kept saying, “You should get a few opinions, you should ask another doctor” because you're so scared, you don't really know what to do. And it had never really occurred to me... When you're talking to supposedly the best brain surgeon at Cedars-Sinai, you don't think, “Oh, let's talk to another.” They wanted to open up your skull and go through the top. I was so scared. I just wanted this thing out of my head. And I had friends that kept raising their hand and were taking notes saying, look, he is an actor, you know, just FYI, makes his money from his face. Those were not my concerns at all. I just really wanted the smartest person to do the job. And then I went to a couple others, and then Dan Kelly was the first one who said, I can reach it. And he had a bunch of videos of testimonies of people that had had this surgery, and they were incredible. They just said things like, I didn't I didn't even look like I had the surgery three days later or, you know, I know it was very, very comforting, but scary nonetheless.
[00:08:17] Nicole: So after you had the surgery, do they know right away what it was? Did you have to wait a little bit before you kind of found out like what the diagnosis or prognosis was going to be?
[00:08:28] Jay: The first thing I remember when I woke up was my friends and my father were there. One of my friends who looked at me. I get emotional when I talk about this part because I just remember her saying, it's not cancer, which is the real concern. That was the real scary thing. It was this very rare autoimmune disease called Neurosarcoidosis, which is what it ended up being. And it's not nothing, but it's super manageable, like rheumatoid arthritis or something. And it's very treatable. And just one of my doctors said, “you have a really good bad thing,” which is totally treatable, manageable, and it's not going to get me.
[00:09:14] Nicole: Oh, yeah, that's a relief.
[00:09:16] Jay: I know!
[00:09:17] Nicole: And so you have to take medication or get MRIs or anything to just make sure that you stay on top of it?
[00:09:23] Jay: I get an infusion every couple of months of something called Remicade, which is a big fancy anti-inflammatory thing. And then I take methotrexate, which sort of knocks down my immune system just enough so that the Remicade can really do its job. And it's all very easy. And I don't know if you had this, but when I go to get my Remicade infusions, which is every couple of months, I'm around a lot of people that make me feel very lucky. Let's just say patients that are not doing so well or patients that have different diagnoses. So it's a it's a really great reminder.
[00:09:56] Nicole: It's sobering.
[00:09:57] Jay: That's right. And I do sit in infusion centers, so I'm always the only person who doesn't have cancer in there. And it's quite something. A lot of young people, their parents, it's a really great reminder of gratitude.
[00:10:09] Nicole: Yeah, absolutely. We recorded an episode a couple of weeks ago with actually this is interesting because he was the sound designer and rerecording mixer on Eyes of Tammy Faye.
[00:10:20] Jay: Oh, wow.
[00:10:20] Nicole: Which you are also in. So we have two guests on the show who worked on Eyes of Tammy Faye. And he recently moved out of LA but was there for 20 years but said the same. He had stage four head and neck cancer. I think he was also diagnosed at 50 and talked about the tremendous heartbreak of sitting there for 8 hours with his infusion while there were tiny children. And it's just like you just feel like, you know what? What I'm going through is kind of nothing in comparison to what I'm seeing around me. So it's great perspective, even though it's really heartbreaking. What else was going through your head as this was unfolding and thinking about down the road what could potentially happen? What was concerning to you?
[00:11:01] Jay: Well, you very, very quickly and this is such a cliche, you hear it all the time, but you very quickly realize that nothing else matters. Not your work, not your daily routine, nothing. This takes front and center. And I prayed a lot and tried to exercise as much as I could and keep myself calm. Those weeks before we sort of knew what it was were the hardest. And I just did my best to stay calm. And a lot of friends that really showed up for me and took care of me and bugged me and called me and showed up when I didn't even ask. But I don't think I even looked that far ahead. I wanted to take care of the task at hand and then see what we were dealing with.
[00:11:43] Nicole: Which is probably a gift, right? That gift of being present.
[00:11:47] Jay: I hope so. I hope so.
[00:11:48] Nicole: And you had that community in your father and friends and people that showed up for you. You talked about learning to advocate for yourself and also reach out. How did you learn to be here for yourself? What were some things that you learned about that through this experience that were new to you?
[00:12:06] Jay: Well, I get emotional here, but you really understand what a friend is, because I had friends that showed up like soldiers with pencil and paper, because I think you and I talked about this Nicole, the fear sort of erases. You don't hear anything. I mean, I went through entire meetings with doctors and the doctor would look at me and say, “Did you get all of that?” And I'd say I'd say, I didn't get any of that, no. And I would turn to my friend with a pencil and paper and she'd say, I got it in a friend who set up a text chain with all my friends. And she would text everybody the notes from that day's meeting. And I really learned what it means to show up, whether anybody asks you to or not. I remember I had an MRI one day and the friend that was supposed to come with me couldn't. And I got there and another friend was just sitting there waiting for me at the MRI, and she said, you know, so-and-so texted me and said that she couldn't be there. So everyone just had this network of showing up for me. I have days where I'm driving in my car and I think back at this time and I think, like, who did that for me? Who drove me home that day? Or how did I have dinner the first night I was home or, you know, and then you start slowly remembering he did that. She did that. And it's a beautiful thing. I learned so much about friendship, and in terms of advocating for myself, I really learned on the job on this one because I'm not good at that.
[00:13:37] So I learned to ask the uncomfortable question, ask the fifth question, ask the question that you think is going to be really annoying and stupid and talk about your fears and ask for help, which is another thing I was previously terrible at.
Because you realize people really want to help. People love you and they really do want to help. And it's not an imposition to say, ‘Hey, I'm nervous about this thing. Would you mind waiting with me?’ And people jump at the opportunity to do that for a friend. That's changed the way I see my business, too. I tend to ask for help in my work now, and you realize that people want to help out. They really do. There's a director I always wanted to work with, and this is two years after my surgery, and I thought, God, I've always wanted to work with this director. I was like, well, if I write him a letter and I wrote him a letter and I called my agent and I said, you know, can I get into casting? They're like, well, I'm not sure. I said, well, I'm just going to send it, see what happens. And he called me right away as soon as he got the letter and said I was such a big fan of his movies. And since drama school, I've always wanted to work with him. And then he called me right away. He said, I love your work too, and hopefully someday we'll get to work together. Anyway, the lesson was that it was so easy and it was not fraught at all. It was putting a whole lot of stuff on it that wasn't there.
[00:15:04] Nicole: How has it changed like you going through this experience? How has it changed how you show up for others?
[00:15:11] Jay: Well, I have a great textbook now because I saw it firsthand of how you do it. And my template now is the way that people showed up for me. And just don't be afraid to bug people. Make that call. Say, I know you have this appointment tomorrow. I know you have this doctor's appointment. Do you want someone to go with you, bug them, you know, really show up for them.
[00:15:34] Nicole: Even just a text. I know I've had some friends really grieving lately, and it's like, don't write me back. I just need you to know you're on my mind.
[00:15:43] Jay: Yes.
[00:15:44] Nicole: And I think you probably can relate to this as well. But when you're going through something like this and people go, what do you need? You're like, I can't even fuckin think about what I need. So it sounds like you're tuned into that. Now you're paying attention to if there's an appointment or they just need somebody to come over and, I don't know, clean the kitchen for them or something, like just putting yourself in that place.
[00:16:06] Jay: Yeah. And I love what you said about adding, don't text me back because sometimes people feel a responsibility to answer you. And the whole point is to be of service so they don't have to do that. I had a friend who had a colonoscopy recently and I said, I know your husband works during the day. I was like, what if I gave you a ride? And what if I just was waiting outside? And they were incredibly appreciative. They didn't need me, but I think they were incredibly appreciative that I had thought of it, which I think is important.
[00:16:35] Nicole: Well, you said, you know, remembering what's important, all of a sudden it's your health and it's people showing up. And to be that for somebody else is another gift of this experience.
[00:16:45] Jay: Exactly.
[00:16:46] Nicole: So when we look at how you show up differently for yourself, how has this impacted you and your life in that way?
[00:16:57] Jay: Well, I've really learned that the commodity of feeling good is of the utmost importance to me now ever since my medical journey. I want to feel good. I want to feel clear and take care of myself. My diet is better. I drink less, I exercise more. So I've learned to show up for myself as much as I can.
[00:17:17] Nicole: I feel like you do a really good job of finding joy in life, too.
[00:17:22] Jay: Yes. As you've probably felt this, it's a scary thing to go through a health thing like that. And I'm not going to waste any time here on earth being worried about the future, and I'm just going to grab everything as much as I can in terms of art and music and travel...
Nicole: and reading scripts and Palm Springs. I love that you do that. You take your pile of scripts to Palm Springs and sit by the pool.
[00:17:48] Jay: That’s right. I just wasn't thinking about life down the road before, how much time I have left. So I think physically I wasn't taking care of myself as well as I do now. And I was always putting things off in terms of travel or visiting a friend. “I'll get there someday. I'll do it in two years or whatever,” and now I just pick up and go do it because we don't know how much time we have left. So I'm grabbing as much life as I can now.
[00:18:18] Nicole: You said something about how the second half of life is so much better than the first.
[00:18:24] Jay: Well, I mean, I don't know about you, but I was a worrier in my twenties and I think it’s a special kind of worry when you choose acting as your career, you just think, is this going to happen? Is this going to work? Am I going to be able to support myself? Am I going to get jobs? Am I going to get better? And the older I get, the less anything bothers me. I forget about things. Something bothers me, I just sweep it off and I do not hold grudges. I don't hold on to anger. And I think my medical journey has played a significant part in that.
[00:18:57] Nicole: In just being present and appreciating. And I certainly see you visiting with your father. You just seem to get out and really spend time with him and seeing friends, even if they're across an ocean, if they've got, you know, a play or something, you’re like I'm picking up and I'm going to see them. Being there for other people. But I think is part of how you're also there for yourself. Let go of that worry and just reach out and connect with people.
[00:19:21] Jay: That's right. When a really scary thing happens to you, it just changes everything. I'm a lot stronger than I thought I was. I'm much more concerned with enjoying my life now, grabbing whatever I can in terms of the great things that life has to offer. And I love my work so much more. And it gives you this really new attitude about life that you've been able to move through something that you couldn't even imagine was going to happen. And I have to say, that's the old cliché of a scary thing being a gift, but I'm a much happier person now in general than I was before this all happened.
[00:20:02] Nicole: Yeah, it's kind of incredible how something like this serves you. I was talking with a friend recently about my cancer journey and how I ultimately ended up having the surgery that I was trying to avoid by having incisional biopsy and injections and initially thought to myself, I wish I had just gone straight to this surgery because I ended up having to have it anyways after six months of other torture. But I also look back and see I wouldn't have learned the lessons that I did and I wouldn't have seen things clearly in my life that I had not been seeing clearly that needed to be fixed had I not gone through that. So as painful and drawn out as it was, it really was a gift. You hate to say you're glad you went through it because that doesn't seem like the right word, but the gift that you get from it, you're absolutely right. And in whether it's someone said recently, someone actually said to me, you know, but you weren't going to die, were you? And I was like, it kind of doesn't matter.
[00:20:57] Jay: It doesn't matter. I mean, we know that now.
[00:21:01] Nicole: But you just don't you could have any sort of medical journey, whether, you know, that's a possibility from the get go or not. The lessons that you learn along the way are just so valuable. And I love how you have reflected on them. And I think this is testament to you're so talented and good at what you do and so tapped into your emotions and intuition, which is one of the things I love about you, is just you've tapped into that to really hold those lessons so close to your heart and then not only be there for yourself, but you're also being there for other people in this beautiful way.
[00:21:35] Jay: Yeah, I think if you don't learn from an experience like this, then you're doing something wrong. I think you really need to learn some lessons here. And I got em.
My doctor kept saying to me, “You don't want this to be 1985,” because he just said, there's lots we could have done, but it would have been extreme. So I feel so grateful that we live in a time of this modern medicine.
[00:22:05] Nicole: Yes, modern medicine. There are so many miracles. I'm so grateful that you had friends that pressed you, like keep talking to more people and you kept pushing and advocating and thank god that you found this modern medicine that was as minimal as it was.
[00:22:22] Jay: We're lucky ones.
[00:22:23] Nicole: We're very lucky ones. I am blessed to have met you and to know you and appreciate your candor and vulnerability.
[00:22:32] Jay: It's been so cool for me to connect with you about this because, you know, we walk around in life and meet people and talk about so many other things. And I remember being at a dinner party one night and I was explaining my health situation to the woman that was sitting next to me, and she had this total blank stare in her face. And I said, “What?” She said, I'm sorry. “I don't know what face to make, but I've just gone through the exact same thing.”
[00:22:56] Nicole: Oh, my God.
[00:22:57] Jay: I know. And we were sitting next to each other talking about absolutely everything. And she had minimally invasive surgery. It was tumor behind her sinus cavity. So we just never know who's going through something. And it's a great lesson to just assume that everybody has something or someone that they love.
[00:23:15] Nicole: Well, you know that great quote about everyone's fighting a hard battle. We all are fighting something. What I really love about you is you're not afraid to share this and let your guard down and talk about how you were scared and talk about what you learned from it. These threads of continuity that connect us are really what help people get through times. Even if it's someone you just met or someone you don't know well yet.
[00:23:38] Jay: And just the notion that we are vulnerable, we are vulnerable people, and we're going to need people at some point. We're going to need our friends and we're going to have to say, “I need you. I need help. I'm nervous. I'm scared.”
[00:23:52] Nicole: Yeah, I think we live in a society that doesn't really encourage that. Yes. And especially for men, you know, don't be sensitive. That's bullshit. Come on. Like everybody's human. We all have emotions.
[00:24:03] Jay: That's right.
[00:24:04] Nicole: Tapping into them and releasing them is how you set yourself free and get through it. But we live in this culture that's like, don't talk about it. You know, it's shameful.
[00:24:12] Jay: It's so true. We're just taught to sort of power through things and not ask for help. My father who is 90, so obviously losing so many friends and he'll casually mentioned so-and-so just died. And I'd say, “Dad, he was a very, very good friend of yours from decades ago. How are you doing? Yeah, that must be very sad for you.” And, you know, anyway, us East Coasters, we need a little nudge every once in awhile.
[00:24:41] Nicole: Well, I'm glad you're there to be the nudge for your dad. I had a similar experience. The first episode I talked about what I call my skin peeling crisis, which was a crazy autoimmune response to a very simple virus. But my dad rushed up to get me to the hospital, and he's 80 now. This was a few years ago, but I was in the ER, hooked up to all sorts of nutrients and medications through IVs waiting to be admitted to the hospital. But he and I were sitting there and somehow started having the most honest conversation we'd ever had. And he started talking about his recent loss of his brother. And he started to cry. And then I started to cry and he was like, “Oh, I'm sorry I made you cry.” I said, “Dad, it's fine.”
[00:25:24] Jay: It's so beautiful.
[00:25:25] Nicole: Yeah. I was like, I'm okay with that. And he had the most vulnerable moment where he said, I think I raised you to not be okay with crying. And I feel very bad about that.
[00:25:35] Jay: Aw, wow.
[00:25:36] Nicole: I was like, holy crap, are we having this moment in an ER? But it was just, you know, so we're both sitting there sobbing and the nurse comes in, we're like, we're fine. We're just having a family bonding moment. But that was that vulnerability from him. I felt safe, really for the first time to just kind of let it go and then tell him I'm really scared about what's happening to me right now, to which I'd been trying to put on a brave face.
[00:25:57] Jay: And he was probably really scared about what was happening to you, you know.
Nicole: Totally.
[00:26:01] And, you know, I was like, It's okay. We're all unsure of what's going to happen. And saying that releases the power from you and releases any shame you feel to It's like it's okay to say it. Just be like, “I'm fucking scared right now. I don't know what's going to happen.”
[00:26:15] Jay: Exactly.
[00:26:16] Nicole: And feeling grief, you know, like with your father, just like it's okay to feel grief. This was a close friend of yours. Like, let's have that moment and respect for someone who has passed that was important to you.
[00:26:27] Jay: Yeah. I don't know where as humans, we got on this kick of it's weak to be vulnerable and sad, but I won't have it anymore.
[00:26:36] Nicole: I love that about you. It's one of my favorite of your many great qualities.
[00:26:40] Jay: So that is over for me. Yeah.
[00:26:44] Nicole: Jay Huguley. You were amazing.
[00:26:46] Jay: Thanks, Nicole. It was really great talking to you.
[00:26:49] Nicole: Jay shared so many great lessons from his journey with neuro sarcoidosis. But I think what I most love is how he shared them. He speaks with such honesty and emotion. He's not afraid to talk about, well, being afraid, being vulnerable, and he's not afraid to talk about this with anyone. He opened up to a woman he met at a party, and to me, when we hadn't known each other long, that's refreshing. And it led to him connecting with others on a deep, authentic level, which we just need more of in a world that so often feels superficial. And he really allowed this experience to shift how he shows up to life, for others, and for himself. These are his lessons that most resonate with me:
Ask the uncomfortable question, as Jay said, ask the fifth question. Ask the question that you think is going to be really annoying and stupid.
Talk about your fears and ask for help. Don't be afraid to say you're nervous. You're scared. You're worried. Don't be afraid to ask people to drive you to an appointment, to sit with you through it or afterward to bring you dinner. People want to show up for us, and let's do the same for others when they're going through a difficult time. Don't make them think about what they need, because they probably don't have the mental clarity to sort that out. Just show up the way you know you can sitting with them through a doctor's appointment, taking care of their kids so they can rest.
[00:28:21] Or my personal favorite while I was battling cancer, Doordash gift cards. Even just a text or a card in the mail saying, I'm thinking about you. I love you. I'm here for you without any obligation to respond is a gift we can easily give. And finally, do your best to let go of worry, anger, grudges. And as Jay does, grab whatever you can in terms of the great things life has to offer. Things that make you feel your best, that bring you joy, that bring you closer to others. Jay said he's much happier now than he was before this scary thing happened to him. But don't wait for a scary thing to unlock your happiness.
Here For Me is produced by Lens Group Media in association with Tulla Productions. My deepest gratitude goes out to Jay Huguley for joining us today to share his story and to the people I am blessed to work with in bringing the show to life. Dave Nelson, Stacy Harris, Amy Kugler, Amy Senftleben and Amanda McGonigal. If you'd like what you hear, please follow here for me and leave us a review. Until next time, I'm Nicole Christie. Thank you so much for listening. Here's to you being here for you and to the power of choosing yourself.