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JARED: I have this one morning paddle right on my drive to work. And while I was doing the paddle on my way and I looked towards work like a man and be nice just like cattle on over to the office. So that became the idea. Like I knew it wasn't a practical route of transportation. 17 miles on a paddleboard can't be done in any time for a workday, but it just kind of naturally fit into my head. Oh, you have 17 miles from the office you had love If you could paddle to the office And while you couldn't do that every day, maybe you can do that as an awareness day.
You are listening to Seize Your Adventure and I’m you host Fran Turauskis.
In this episode, I am expanding our map of ‘adventure’ because for the first time, we’re heading out to sea. It slightly surprised me to realise that I haven’t had any sea-based adventurers on the podcast yet. The ocean has often offered ‘adventure’ in the traditional sense - the swashbuckling, finding new lands kind of adventure.
But whilst the heyday of adventure on the high seas is over, in today’s conversation, we talk about how the power and unpredictability of the sea can still offer adventure of the everyday kind.
My guest today is Jared Muscat, and for Jared, surfing has been a passion, an obsession, and in his own words an addiction, since he was a teenager. Surfing was part of what led Jared to his current job working for the outdoor clothing company Patagonia. And it was on Patagonia’s blog that I first read some of Jared’s story about his epilepsy diagnosis, and a paddleboarding challenge he did to raise awareness for the condition.
I immediately went to follow him on instagram, and I learned that he was preparing to have brain surgery to stop his seizures.
Now, I really wasn’t certain about the etiquette of contacting someone you don’t know just before they’re about to have brain surgery, but when Jared followed the SYAdventurers account back, I sent him this message:
“Thank you so much for following us. Your life is the epitome of what I’m trying to highlight with Seize Your Adventure and Patagonia is such an iconic brand. Would you be interested in talking to me more? I’d love to have an interview or Q&A. Completely understand if I don’t hear a response for a while, best of luck with the surgery.”
This was only a couple of weeks after the Seize Your Adventure website went live, and you may notice I said ‘thank you for following us’. I really wanted to look bigger and more impressive than I was!
And I wasn’t expecting a response.
But Jared got back to me straight away in typical surfer fashion: I’d be stoked to be a part of this, shall we talk on Friday?
True to his word, we had a chat that Friday and I put one of his blog posts on the Seize Your Adventure website.
But we never managed to do the interview - until now. So here it is, my chat with Jared Muscat.
FRAN (to JARED): I came across you, Jared, because you are one of the few people that had written about epilepsy in adventure sports before I actually started seizure adventure. So one of the places that I saw one of your blocks. Wass Action! The Patagonia website. Now you work for Patagonia, don't you, sir? Can you tell us a little bit about how how you started working there and how you pitched the storey to them?
JARED: I grew up with surfing is my passion. Since the time I was nine years old, surfing became the one thing I wanted to do each and every day. And as soon as I got my licence, that passion grew to another level and surfing became basically all I did each and every day. Aside from doing well at school so that I could get go to a college that was right next to the ocean. That that was what I studied and that's what I worked for and then after graduating from college, are working surf industry and gradually found myself at Patagonia. And Patagonia is where I really started tow. Take a true self evaluation at the way I approached my battle with epilepsy. I had a couple major seizures, one that put me into the hospital for three days or so during my first year of working there, and my co workers rallied around me with with support and emotional support, bringing meals or just giving me rides to and from the office. If I felt wrong and it kind of cup empowering me to talk louder about issue, I hadn't really talked about it publicly before working in social media One day I was out on my morning Adal and Facebook Live had just launched and I thought to myself I worked at the right company to say that Hey, let me take the day, Teo, help raise awareness and test out some product. And my boss immediately gave a yes and yeah, that was that. The kind of kept kept just growing organically from there.
FRAN: Yeah, that is absolutely fabulous, Said they. It sounds like they were behind you right from the start. You didn't have any concerns about telling telling your employers that you have epilepsy?
JARED: Yeah, I, um I ran at an incident with my first professional job on remember driving in on my first day and going back and forth on whether or not to tell them I had epilepsy and and I made the decision not to tell them about the epilepsy. And about three or so weeks later, I had a seizure in the office, and all of a sudden I was surrounded by the E M T. And the M T was trying to pull me into the hospital. And after you get hit by a seizure, you don't really speak too well for a couple minutes. Took me quite a while to be able to get them to back off. And my friend, who was the one who called him t you know, I had a flat seeing and I look back on it, and that cost me a couple bucks to pay for an ambulance ride that I never took. And it caused me a lot of embarrassment in a certain way of just babbling in front of coworkers while trying to explain things. And that was the instinct that told me You need to make sure everyone around she knows, because that has it great effect on your health and might even be your wallet. But at the end of the day, if they don't know, you can't expect them to help. And so that was the learning lesson. My next job, HR did it really like that I had epilepsy. I would try to say, Um I would try to take work days for home if I ever felt like I might have a seizure. And they forced me to sign an F family paper so they wouldn't pay me for days that I thought I might have a seizure. And that didn't deter me from thinking that everyone around me there's gonna be with me for 8 to 9 hours of every day should know that their next someone who might go through quite a little bit of, ah, seizure. But does it need to go to the hospital for that seizure and may be trying to make me comfortable and not let everybody see what happens? And so Well, that's how I took it to Patagonia. And from day one, I was embraced in people, accepted me and reached out and support and reached out to find help for their friends and loved ones.
FRAN: Yeah, I think that that is, it's something that I hear quite a lot, and it's something that resonates with me being able to put your trust in people that you tell them you have this condition on DH, trusting them, to be able to help you essentially on DH I think that for myself, and it sounds like you might have found it with the Patagonia crew as well, because you are putting your trust in people a lot when you're doing adventure sports and when you're doing that kind of thing. Quite a lot of the people of in the adventure community seemed very accepting of it. When I tell them a lot more so than in a regular jobs and that kind of thing, I don't know if that's something which you have come across yourself, if that's if that's the way that you feel?
JARED: that's a good I hadn't thought of it from that perspective, but I guess that makes a lot of sense. We're a culture of happy and proud to admit we're a culture of, um individuals. And while we are a family business for a bunch of people whose for the most part first priorities get outside and doing our personal favourite passions and so there's definitely a certain respect that is embedded into our community. Then I would say in general you know any other surfer door enthusiast I've met with epilepsy has a pretty similar storey to tell in terms of who they've had the easiest communication with. And do they have the toughest communication with? Yeah, yeah. I was recently connected with a fellow surfer with epilepsy, and he works as a substitute teacher, and he recently had a seizure after the workday was Donny had a seizure and his employer put him on leave and then decided to fire him because of his epilepsy. And so I think that's a perfect example of industry and the people that you're around being ableto correctly assess and understand in the nature of the disease. And it's personal effect on you.
FRAN: Hmm? Yeah, it's, um it's something that, yeah, it is just really difficult that one, because it seems like it's such potluck in terms of your employers and who you put your trust in sometimes in that side, because that there's quite a few people that Aaron teaching jobs, that I've heard exactly the same thing. And yet these are people who are potentially coming across kids with epilepsy, so it's always a bit of a strange one for May.
JARED: It always surprises me that people like to put. They think there's a bubble wrap that can put around apple up so soon? There's nothing. It's not simple.
FRAN: Yeah, let's talk about the paddle boarding challenge that you did. He wrote a block for is on the Patagonia Blawg initially. And then we put it on the seizure adventure website on DH. It was about one of your paddle boarding challenges. You went from home to work on DH. You were doing this to raise awareness and raise funds for an epilepsy charity. Can you tell us first off why you decided to do that particular route and how far the route was in the end?
JARED: I don't really have that good of a story for that. I wish I wish I did. Boston, whenever I'm talking to people, is like surfers were pretty dumb, Pretty basic. Like the whole idea came to me. I was in the middle of I had a morning paddle that I'd do before where I live in Santa Barbara and, um, in Santa Barbara starting in spring. This swells basically don't make it in there. No summer swells make it up through there from the south because of the Great Channel Islands. Um, what does basically like if you want to stay in the ocean you need to paddle and so that I got into paddling because I need my time in the ocean. And I had this one morning Cottle Audi right on my drive to work. And while I was doing the battle on my way and I'd look towards work like a man and be nice, just, like not get in my car and get to the office just toddle on over to the office. So that became the idea. Like I knew it wasn't a practical route of transportation. 17 miles on a paddleboard can't be done in any time for a workday. But that was it just kind of naturally fit into my head. Oh, you have 17 miles from the office. You would love it if you could paddles to the office. And while you couldn't do that every day, maybe you can do that as an awareness day. So that that's what what spawned it. There wasn't anything particular about 17 miles. My buddy and I run. We do a pile paddles almost every other day. 17 wasn't a big number. That just happened to be the number.
FRAN: Yeah, no, I think that's ah, that's a perfect one. I mean, I ended up doing the Camino cause I typed in "hikes in Europe", so I think it's a slightly better story than mine.
SOUND CLIP - FACEBOOK LIVE
"Morning everybody. Epileptic Opportunity coming down. How we get out. Hi, everybody. Are you ready to paddle? No dolphins yet, Kim. What a gorgeous morning"
FRAN: I want to talk a little bit about epileptic opportunity. So this is something which you mentioned in your storeys. But can you go into a little bit of detail about where that phrase came from initially?
JARED: Yeah. So I was on my way to college when I had my first state seizure. Was on my way to my freshman orientation and ah, sees your claws past quite a bit of commotion. I got taken into the neurologist and they pretty much diagnose me right off the bat. And as the doctor, I don't remember her name. I don't even know if my extra for is the correct picture of who she is. I might just be made up memory, but she was asking me about, you know, my daily routines and all those things trying to get me prepared for the change that was ahead. Just me and very specifically. She's I do to physically exercise Often. It's important for someone with that collapse would be in good shape. Very proudly turned over to her. I actually size daily. I served almost three times a day. Yeah, I do yoga. You know, I kind of gave her my little surface feeling. She just stops me mid sentence and goes, Yeah, we're gonna have to cut that out, Is he could die die out in the ocean if you have a seizure bonnet. I said minutes ago you told me that I need to be stress free if you want me anywhere near stress. Free your back And I can't say goodbye to the ocean. Shouldn't fight me on it too hard. But she didn't accept that answer. And she said she just continued and goes And alcohol. I know you're about to start your college life, and it's time to start drinking with your friends, but I strongly advise against in the alcohol. I said that is actually perfect. We agree. I'll use that excuse at the party V. So I wake up early the next morning. It gets the surf before all my buddies, all my buddies are hungover,
That was kind of it. Right off the bat. I turned it into, like, all right, this disease might suck, but they're just certain little nuances of what I get Khun Dio and how I'll live that not others necessary to get the same access or perspective of and yeah, I just kind of kept growing from there on DH every time I have a Caesar and it forced to stay home for the day and get my mind back in order. It's I haven't had a suitor for over two years and I definitely hope I never have won again. But there was also some certainly a little bit of, ah, blue Sky Teo sitting back for the day stop in and appreciating the fact that others not my body, is in good health. And a pretty good I live a very fortunate life living in California on the tell us that a company I'm proud to be a part of and I've got a great wife. Yeah. So I forced myself to make sure that I didn't do epilepsy with negativity and I found ways into opportunity.
FRAN: Yeah, I love that. I think you're way of using it as an excuse to look after yourself. Essentially. So you're saying stress for it. So you're staying stress free. You are not drinking alcohol you're using is an excuse, Teo. Kind of. I go home from parties if you need to. In that kind of thing, I think it's, ah, a great way to approach it rather than seeing seeing everything that is bad about it, seeing those opportunities as well, Like you say. Yeah. So you mentioned there that you haven't had seizures for two years now, and you had difficulty getting towards that stage on DH. You actually went into have brain surgery two years ago. What I would like to talk about would be after the brain surgery, when you weren't able to swim for a while afterwards. So after you had the brain surgery, how long was it that you were out of the water whilst you were healing?
JARED: They demanded three months at minimum on, and I, um, asked why, and they said the only trees that the first month is still at my brain trying to figure itself out, and then the last two months or so that that nice gigantic scar they put into my head could thoroughly hell and there would be absolutely no opportunity to, in fact it or anything like that. About a month and a half in, I was felt my scar was pretty pretty good and tried multiple times to get the approval but didn't get it and decided it was absolutely not worth battling. And on that because of the long term outcome, sacrificing three months of waves for L the rest of my life seizure free and not wearing about any possible lasting infection from the not very clean ocean that we have California it was worth. It was it was drying the first two weeks after this surgery or some of the most difficult in my life, and that I was drugged up and then some and working hard to get off the drugs as fast as possible while not realising the amount of swelling and pain that those drugs were battling. And, yeah, you know, I remember not being able to really control my temper too easily or even understand what was going on. It hurt, too. I couldn't lay down or even rest my body over towards the left side because that's what they did. The surgery on the left side than all the blood would run over there. And then all of a sudden, my head would feel like it was 25lb on my left eye. And so that was really tough. And I remember that was that was a period of time where I really the only people that could understand and really helped me figure out the right approach for other follow up Flopsy lawyers who've been through surgery, who I reached out to him and ask, What the heck does it make sense that I'm thinking and feeling what I'm feeling? They said, Yeah, they did it and I saw them and they're they're all well off. So I trusted them. Well, yeah, you know, like by around two months. Oh, surgery. My scar looked all year that those 52 staples were well removed and you couldn't see any scabs. And the swelling was gone. I'm not get it. Not surfing. E haven't served in 2.5 days and people probably Khun notice by the tone of my voice. So yeah, cheque time. But then what? Always remember really is that, like I remember the first time back in the ocean is one of the best service I've ever had in my life, and not because the winds were all that good or I serve file or anything. Just that the rush of emotion, that hippie when I ducked off under the wave and got the field water, surround my head for the first time and pretty so months. Just look out at the ocean and see and feel that energy again. Energy. I not forgotten but definitely didn't get the field. And there's, you know, you can watch it. I watch so many frickin videos of myself and photos of myself and like everything to try and re insert myself into the ocean in my head, and none of that was gonna do it. Then he did the ocean. As soon as I got back, I felt complete. I'll never say that the chapter's over because you know, who knows? Tomorrow I could have a seizure a month. Now I can have a seizure that felt like that moment of going under the water felt like the final nail in the product of saying goodbye. The surgery and continuing a new life.
FRAN: Yeah, I suppose that what I would swear I would ask you to say is if people are people are at the stage where they're thinking about anything, like brain surgery, Which there be anything that you could say to them? Would there be anything that you would Ah, I suppose not. Advise, but anything that you can give from your own personal experience of that period coming up towards your surgery and making that decision.
JARED: I remember two phases, really, of the path to brain surgery. Remember the day I found out I was going towards possible brain surgery? They'll then say we're doing it for sure. They said, Hey, it looks like you're a good candidate for surgery, but we need to be a lot of tests to figure out exactly where in the brain we're going to do the work so you can make sure you don't let your brain keeps functioning at a decent level. I'm not a high level guy, a decent level. So I remember. And during that those like first, the first week or so after the idea that surgery, maybe in the future that I had a lot of anxiety not about Oh, my God, someone's gonna work in my brain. But it was more of Are they going to do the work in my brain? Can they do the work of my brain? Is the opportunity like, is that really? Can we actually get my brain fix? I was just so nervous and anxious. Teo, go through the tests. I remember scheduling tests and, you know, so hard toe all the different machines they have and all that stuff. It was like trying to get a test done every two weeks was was difficult to try and make the process fast. And I remember just trying to speed it up. And then about seven test later, they decided, yes, they're gonna be the surgery. And it was time to just schedule out of surgery. And that was based on a lot of other Yeah, timelines. And so then all of a sudden, I got to a point. Where is two months out? You're having surgery in two months. We know exactly what we're gonna D'oh. We're excited to do it, But we have to wait two months and I remember just those were the longest two months however, I like each day felt like a month each week felt like two months. I was so excited and ready. I think any fears I had had been kicked out by 10 days in a coma and hundreds of seizures. All I wanted was to just see what the next step would be. I don't say that necessary as well. Bravado, Dude, it's more like number bada. My idea of how to handle it was to say, Let's go, That's what I did And I know it works for me. I know it doesn't work for everyone. They also I mean, they took my amygdala out. So you know my fear processing.
FRAN: Yeah, This is something. I'm really interested in it. So I think you've told me it before that you had that section removed on DH. This is something I really want people to look into. I'm going to try and get some kind of neurologists and epileptologists to look into this in terms of the image villa on DH. Folks like us that curve into the adventure sports on that side because I know that there's been stuff done looking at that in just the adventure sports. I'd love to see if there is a relationship between the kind of, like epilepsy side and that kind of thing, but yeah, yeah, I don't know. Obviously, I have absolutely no skills in that area. I'm just intrigued to sir. I'm hoping one day I'll get someone else intrigued in it for me when
JARED: I look back on it all. And I remember how my brain used to function it's so easy to track down how like Oh, yeah, of course. That perhaps he was looking in the big deal about some days was, like, so scared about just about anything. But I remember the first time I served big with paddling out, and I remember these chills on my back. I remember popping up in laughing.
FRAN: All right,
JARED: Clouse. Quite the change and emotional fear that this went down. Nowadays, I just I I'm a dad. Some have like a dad brain amygdala. That does slow me down. Yeah, today. Good thing I still had my Magdala before I had my son. Otherwise, who knows?
FRAN: So you had the couple of months where you weren't surfing after your surgery. Was there anything that you you did do to keep active. Or that did help you during that time. Must you, Khun, do your sport in particular?
JARED: Yeah. Yoga doing yoga Since I was a teenager, I broke my back when I was 16 and part of the rehab was you know, God, I've been avid about it ever since, and I got to the point of training to become a yoga and shop there, but only veered away from that because I wouldn't ever spend enough time. Could be a yoga instructor to make money on it. I'd rather sir, I just You know what? Put all my focus and effort in to my yoga. And I remember I was I was another benefit of By the time I was back, I was more flexible. And I ever have been in my life. Probably ever will be. No, I don't get to do the same amount of yoga with dad duties, but yeah, do it before work during work and after work. It just it subbed in for my surf sessions. That's I how I did it.
FRAN: Yeah, that's cool. You mean you haven't tried the baby yoga?
JARED: Wait, We didn't do it. Do it. Do it. We just see that he doesn't have the patience to do much longer than a five minute
FRAN: sounds like me. What does adventure mean to you? How do you describe adventure?
JARED: Adventure is putting yourself in a position of the unknown and not the unknown. An overarching are the high level adventures. Put yourself in an area that is unknown to you. I considered just about every single surfing adventure. How extreme of adventure depends on the mood and depends on what the ocean provides. But each time you paddle out, you're going to experience something different than the last time battled up. But I think that's why surfing will forever have me addicted, never paddled out and left the ocean. Having fulfilled the expectations put out, walking out there, I might see perfectly is and expect to get the best barrels of the day. And I might come in and I got the worst winds of the day and I might be angry right now. But five minutes after that, anger subsides and triggered into all right. Next time where am I gonna go? Let's go. I'll go find something else like it doesn't doesn't get monotonous in any way for me. I know everyone's different. I know I've heard my climbing friends talk about how they'll be going up the same pitch for the 15th climb and they'll see a new hold. And they get excited to take that for my mountain bike friends talking about the difference of a morning ride for an evening ride and all that stuff. And so you know, to me, adventure, it's just being somewhere that you haven't been before. And there's no way to truly replicate the ocean, and there's no way to replicate any single moment of the day. So places where you want, how extreme you want.
FRAN: Oh yeah, I totally he on that. I think that that last point in particular, however extreme you want, is, ah, a good way of doing it. As you know, I'm not a surfer. I I'm terrified I'm doing. I'm not terrified. That's a lie. Actually, did a ah free diving taste a session a couple of weeks ago? It was really good. I was so nervous going into it because I am not good in water, like I literally can't put my head under the water, usually on DH, they were so good with May and they just, like, talk me through it. And by the end of it, I actually came out of the session having been in the water for an hour going Wow, I'm so relaxed, which never happens when I'm in water.
JARED: Everyone has their own different views. I'm all for it.
FRAN: Yeah, absolutely. When you started telling you're your own story and writing your own story Is that something that helped you through your diagnosis and through you you kind of difficult periods?
JARED: I think so. Let's look back on it. And I wonder why I thought to share it with you. Well, it all seemed very personal, like diary entries for me. I I used to, especially back in college. I wrote poems and short storeys all the time. You know, once I became a professional, people now have it up kind of said goodbye, but yeah, each one of those came, you know, right after a big moment, whether it be a big Steve will seize your battle or the decision, Just try and find a new doctor. Um, yeah, they're just self reflection moments gonna have it really written much sense because I haven't done too too much self reflection sense. Not that I don't need it, but I just haven't e I want Teo. I've structured out writing a book about the whole, um, journey. We'll see if my my hands are We're gonna find that energy.
FRAN: Hey, you on that one. I have so many half finished projects. It's ridiculous. But I'd like to read your book if-- when, WHEN it comes up, I'll make it. When I hold you to account on it.
JARED: That'll get me moving.
FRAN (in studio): I only had about 40 minutes to speak to Jared whilst he was on his lunch break, so there were things that we just didn’t manage to get into this. But if you want to learn more of his story, you can follow him on Instagram he’s @jaredmuscat - and Jared knows some fantastic photographers so his feed is awesome. And you can still read his story on the Seize Your Adventure blog as well.
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I want these chats to reach as many people as possible, which is why the podcast is of course free to everyone. But it actually costs me money, and more hours of work than I can count.
If you are in a position to support me financially, you can help me produce the show by becoming a patron. If you head to patreon.com/seizeyouradventure you can become an Adventure Ally for $3 a month and there are various levels of support all the way up to Producer at $250, which covers the basic cost for one episode.
The snippet of music in today’s episode came from Kev Rowe on soundcloud under a creative commons license.
For the last part of this episode, I’m going to hand back to Jared. When we were talking, we went off on a bit of a tangent about our families and support crew. But because the connection was pretty bad and we were talking over each other, the audio for that wasn’t very usable. So I asked Jared to send me a little something to just fill in some gaps. But he sent me something that was just so nice and honest that I thought I’d give it to you here unedited for you.
So enjoy the slightly longer post-credits than usual, and until next time, safe adventures.
JARED: A lot of parents reach out to me, Talking about my Storey is an inspiration to their child or an inspiration to them and how they're going about their approach for being a parent to a child with epilepsy. And I'm always honoured and flattered to hear such kind words, and it means a lot to me. But I usually the first thing I do is I toss out the idea of Have your child reach out to me. And instead of trying to coach your child or lead your child on the on the battle with epilepsy, ask your child for what? What their plan might be. How how they want to go to the doctor, what they want to ask the doctor. Put that child as as the leader. I was diagnosed with epilepsy at the age of 17 on the way to my freshman year in college, and up until that point had been the goody two shoes, Son had straight A's. I was on to sports teams. I got into the college of my choice, and a lot of that was was things to the great support my parents had provided and the independence an opportunity for me to. Really, I find myself and work, too. Build my future. And then I got diagnosed with epilepsy and our relationships changed. Now, as a parent, I can much better understand their perspective. They're perfectly healthy son heading off for college with with the disease that is hard to control and a disease that had never been a part of a family discussion before. But at the same time, I was a 17 year old. I was the one preparing to be a grown adult, and I was the one living with the epilepsy, and it was my responsibility to determine a plan for how I would live with the epilepsy and and try to control my seizures. And my parents and I fought a lot on that, and we didn't We weren't very transparent with each other, and I take a lot of responsibility for what I did. And it's taking a while for our relationships, too, have that transparency and just consistent communication that we had pre diagnosis. But you know, through the process, they've never stopped supporting me endlessly and tirelessly and time and time again after seizures or tests that they've always been the first there to me in, you know, time and conversations that take care of things. Well, then, specifically at the end of the day that they did begin to listen to, and my brother and my wife really lived through understanding what an epileptic opportunity is, and my main thought behind that is the only person who can truly understand what is going on is the person who has the seizures and the only person that can decide what is a comfortable approach. What is the least stress filled? What is the best well rounded approach? Is that person dealing with the battle? And my brother and my wife were quick to adjust to that viewpoint and perspective, and and my my parents, it took them a little bit longer and, as mentioned earlier as a parent, I can understand you when I see my son's stumble on a red carpet. I I tried to jump out there and catch him so I can understand how difficult it is for a parent to know. Do everything possible to put that protective shield and bubble out there for your child. But if you empower them, if you let them lead, the way they'll invite you closer will be more transparent. And there is more opportunity for unity in the journey in battle that is epilepsy, and I can't encourage that and not for everyone involved. Be transparent the of team. And let that person who's most involved in the battle the person who's going through the seizures, who has to put on the E e g hat or sit in an Emory barrel or any of that fun let that person lead the way because they know what they're experiencing best. Maybe they're not the doctor, and they don't know everything that you might know. But if you let them tell you what they need and what they feel, that is the way to make sure that you are a team and that they feel comfortable and there's never a lack of information throughout the family, and the process