We're All Insane - Lost Her Boyfriend at 16 Years-Old

Episode Date: March 13, 2023

Diffuse Intrinsic Pontine Glioma (DIPG) is a rare and aggressive form of brain cancer that affects the pons region of the brainstem. It is most commonly found in children between the ages of 5 and 9 years old. The pons is responsible for critical bodily functions such as breathing, swallowing, and heartbeat regulation. The location of the tumor makes surgical removal difficult, and traditional chemotherapy and radiation treatments have had limited success. The average survival time for DIPG patients is less than a year from the time of diagnosis, making it a devastating diagnosis for patients and their loved ones. The impact of losing a loved one to DIPG can be profound and long-lasting. The sudden loss of a child, sibling, or friend can leave family and friends feeling overwhelmed, shocked, and heartbroken. Coping with grief is a unique journey for each individual, but it is essential to seek support from family, friends, and professional counselors to process the emotions and navigate the healing process. Although the loss of a loved one to DIPG is a challenging experience, it is important to remember that their memory can live on through advocacy, fundraising, and research efforts to find a cure for this devastating disease. Kate’s Instagram: https://www.instagram.com/kateteneyck/ Kate’s TED Talk: https://www.youtube.com/watch?v=6Qp-Otrt8ek Kate’s Book: https://www.amazon.com/dp/B08VV7YRK4?ref_=cm_sw_r_mwn_dp_V3KVJWVPBEC2BGZH4KCG FREE-1 year supply of Vitamin D and 5 free travel packs with code INSANE: www.athleticgreens.com/insane If you have a unique story you'd like to share on the podcast, email [e-mail]. Learn more about your ad choices. Visit megaphone.fm/adchoices Learn more about your ad choices. Visit megaphone.fm/adchoices

Hey guys, it's me DeVora. I just dropped an all new bonus episode inside my new subscription channel, We're All Insane Plus. This week's bonus episode is called My Brain was Slipping into my spine. Listen now by subscribing to We're All Insane Plus inside your Spotify or Apple Podcasts app or go to we're all insane.com. Hey guys, welcome back to the show. Today's episode is sponsored by Athletic Greens and they are giving you a free

one-year supply of vitamin D, along with five free travel packs with your first purchase. All you have to do is go to athletic greens.com slash insane. That is athletic greens.com slash insane. Enjoy today's episode. Hi, my name is Kate, and I'm going to be talking about my grease process after losing my boyfriend of cancer. So essentially, I was born. I came out of the womb, and then I was here. And then the first time I really started struggling with my mental health was when I was like eight, I started like, I started like, I was always very anxious, like as a child. Like I was like a very stressed about everything for no reason. But then all of a sudden like one day it got like drastically worse.

Like I couldn't sleep. I was like really like feeling just awful all the time. and my mom was like something is just not right because something was very weird. And so I'm from Syracuse, and so we do not have good health care up there. And that will be a common theme for both me and Charlie. But my mom took me to this doctor and he was like, my mom thought I had this thing called Pandas, which is pediatric. like it's autoimmune strep infection.

Okay. So it's like essentially where you get really bad OCE as a result as of chronic strep. Okay. So it's like a really weird thing. Yeah. Because I would get strep all the time. So they thought that's where your anxiousness was like spurring from. Exactly.

Because of like how like rapid the onset was. But the doctor was like absolutely like. No, like people don't really get that a lot. Like, because it's a newer development. Like, they only, like, discovered it in, like, the late 90s. Yeah. And this was, like, I don't know, like early 2000. So it was still, like, new.

But then I literally had strep infection when I was there, even though I didn't feel sick. And they immediately realized that that's what the problem was. Yeah. But they really couldn't do anything about it because it was in my system for too long. So like now I just have Chronigo City. And like that was kind of like the first time in my life. I like realized that I was going to be a person with health issues for the rest of my life.

But yeah. And like he, I remember I was I was literally like eight years old. And the doctor goes to me. He goes, I think you're one in a hundred thousand. Or I think. And I was like, oh, good. Yeah. So like did they give you any medicines for it?

Or they just just kind of were like, this is what you have and deal with it. It's, so I had to be on antibiotic for like four years, like a very long period of time. Did that affect your health at all? Like being on antibiotics for that long? Not that I noticed, but I honestly could have and I just don't remember. Yeah. Because I feel like that's pretty harsh on my body. Yeah, yeah.

I don't know if it was a lower dose or what it was. But I was on it for like years. But like essentially that was just so I didn't have strep in my body anymore. But it wouldn't get rid of the symptoms. Got it. So I've had like very severe OCD ever since, which is like weird in itself because it's like OCD is like one of the weirdest things to explain, especially because I don't have it in a lot of like the stereotypical ways, I guess.

Right. Like I had a phase where it was a hand washing phase, but it goes in cycles. So then now I'm not a hand washer at all anymore. Now I'm like more of like a checker. Like I have to like, like this will become a common. theme but like I will think people are dead and so I have to like check their like location to make sure they're alive. And so like that's kind of that will loop back around. But that's your thing right now. Yeah. Okay. And then like going on through life, all pre-Charlie still. Like when I was like the eighth

grade, they started to realize that my hips and my joints were just not good because I was a runner. And I was like running on the high school team. Like I really loved it. Like, because I'm like built like very lanky, like a string bean. So like that was obviously. Perfect for running. Exactly. But my joints were, my hips would kill me every single day.

Like they like snap on each other. And then so I had a hip surgery because my femur is in the wrong place. So it's too forward in my pelvis. But they didn't realize that there was a bigger component to it. So, like, I had the surgery and it didn't help anything. And they kind of were just like, oh, she's just a young woman who's having pain. Like, she's making it up. It's period pain.

Like, naturally, of course. So, yeah. So, like, that's, like, all my, like, pre-justcate stuff before Charlie really even came into my life. So Charlie came into my, I had known him since kindergarten, but he really didn't become an important part of my life until the summer before my junior year of high school. Like we were very friendly and we were in cross country together, like, but we were never like friends. It was just like, oh, like hey, like just. So did you know each other like through school or was it a family kind of like family friends kind of thing? Through school.

Yeah, just through school. but we like I said like we really weren't close um but then our freshman year of high school um he got very sick very fast um and no one could figure out what was wrong with him um and then all of a sudden i remember vividly i was um with my friend tim and he goes to me he goes charlie has cancer and i'm like what do you mean like he was like 14 years old like who gets cancer at 14 So at this time, you and him were pretty close? Or you said it wasn't until your junior year? Yeah.

So not at this point yet. So freshman, but freshman year is when he was diagnosed with cancer. Yes. Okay. So that's when he was diagnosed. And like I knew it wasn't a good prognosis because of the way my friend said it to me. I was like, oh, like, is he going to be okay? Like, is there treatments?

Like, and he just was kind of like, like, no. Yeah. Like, there's really nothing. But, like, he didn't really know either because, like, again, we were, like, children. I was going to say, at ninth grade, you're still so young. I feel like even though you know what things are, your mind still doesn't fully grasp those kind of, you know, the seriousness of those kind of things. Exactly. And I definitely didn't grasp it at all.

I was just like, he's going to be okay. Like, it's going to be hard. Like, we all had these hardships and, like, he's going to be fine. And then so shortly after that, I texted him and I was like, can I bring you fudge? Like, because people, I, I just, in my head, I'm like, if you have any problem, I have to make you fudge. That's only the way I know how to, like, care for people. Yeah.

I'm a big, like, gift giver person. I like to bake things for people. Where's the fudge? I know. I'm sorry. How are you going to bring up fudge and then I'll bring fudge? I know. Okay.

Now I'm upset. No, just kidding. Keep going. I send in the mail. And he was like, yes. Of course you can bring me fudge. And so I just showed up at his house one day with like a thing of fudge. And he was like, it was like the most awkward thing ever.

I was like, hey, here's your fudge. And he was like, thanks. Was he going through any treatments at this point or not yet? Not yet because he had just got diagnosed. And like this was before he could like, he went all over for treatments. I think he was in Ohio at one point. He was in Austin at one point. He was in Mexico at one point, like everywhere.

But this was like right before he said. started treatment. And then I kind of just went on with my life, you know, just like being in high school and doing all the things. And then all of a sudden, like, the summer for junior year, he like just text me out of the blue and was like, Kate, that was just so genuine of you that you brought me fudge that one time. I was just thinking about it. I just thought that was really sweet of you. And I was like, really, wow, like, that's nice. Because I would have to check in on him every once in a while. Because we were friendly and I just, I worried and like, I literally, my OCD, like,

a latch on it big time. Like, I would pray every single night for him. And I'm not religious at all anymore. But, like, I, like, every single night over and over and over. Because, like, OCD is a big thing of, like, cycles. Like, I do it. Okay, I'll pray from 10 times every night and then he will stay alive. Well, like, spoiler alert.

Like, he didn't. He's dead. But at that time. That's what I thought. And yeah, so he just sent me that. I was like, that's the sweetest thing I've ever heard. And so we just started talking a little bit, just texting. And immediately, as soon as I started texting him, I was like, oh, wait, like something's there.

Yeah. And I was so nervous about it because I hadn't even ever had a boyfriend at that point. I was very innocent, for sure. I would like, like boys, but I would never speak to them. Yeah. I would just like stare at them. Like, that was enough for me. them.

Exactly. On the 14, that was enough. Yeah. Actually speaking to a man was just not for me. But I started talking to him and it was just so easy. Right. And he was just so funny. Like, he was just one of the funniest people I've ever met.

He's always doing, like, impressions. And, like, if there's, like, anything of, like, old men and, like, all sorts of, like, weird things. Yeah. He's just, like, one of those very witty people. But you wouldn't know it because he was very quiet. Like, unless you were close to him. like you wouldn't know it.

And so I was like, I'm starting to feel some things, but I'm going to push it down because like this seems like a lot. And at this point, I don't think I knew that he was terminal, but shortly after I learned. But even when I knew he was terminal, I don't think, honestly, up until like a few months before he died that I truly understood. So we went to just go hang out. We just went to go see a movie because like he was obsessed with movies. he always wanted to go movie theater.

Like everyone got him, like, those like regal sima gift parts because he was sick. Like he would just, he would always call it like cancer perks. He's like, I've got all these perks, like when we treat you to a movie. And I'd be like, okay, slay, like I'll come. And so we went and we saw the Glass Castle. Like this wicked sad movie. Like, why on earth did we go see that? Right.

And I just was dying laughing the entire time. I was hanging out with him. It was just so funny and just so easy to talk to. and just like I just really enjoyed being around him like more than I had previously with like with a guy before like I just never had felt like that strongly before and yeah he was just wonderful so I eventually like I really battled myself whether or not I was going to tell him because I knew in my heart that he was never going to admit if he had feelings for me why did you think that I think because a combination of him being shy and him being sick, I think he, I don't think he ever

wanted to bring anyone into that. Got it. And if I never had said anything, he would have ever said anything. Okay. And he told me that because I eventually, I was battling with myself back and forth. I was like, should I say something to him? Should I not? Like, I don't want to upset him.

Like, I don't want to, like, have it. be this big huge thing. He's got much bigger problems to worry about than like my feelings. Well, it's tough too because it's like you enjoyed his company, which you could have just left it at oh, like, we can just keep enjoying each other's company. But at the end of the day, we're all human and we have feelings. And I think naturally when you start to like somebody, you want to tell them. You know, and like we all want it to be more if you do like someone. So it's like, I can imagine like the back and forth like within yourself of like, should I? Should I not? It's like, you know, you just, you never know. Exactly, exactly. And I, yeah, I was like, I should just leave with friends, blah, blah, blah, and I just couldn't. Like, something in me just knew that I couldn't. And I, I just, like, was really ballsy and just was like, I like you. Like, you don't need to say anything about it. Like, we don't need to speak of this ever again. Like, I just have to tell you, otherwise I'm going to lose my mind because I'm a very big person of, like, taking

risk because like you don't you if you never try you're never going to know like I can't have any regrets in my life I'm like deeply afraid of regrets and I can like truly say that I anything that I wanted to do I just do because I like the idea of not not completing what I need to do is just so unbearable to me yeah um and not knowing and never knowing because I'll I'll stick on it forever I'll think about it forever. Um, it's just imbearable to me. So I, I told him and he was like, Kate, like, I feel exactly the same way. Like, I was never going to tell you because I want to bring you into all this. Like, um, and I was like, like, fuck it. Like, I'm, I'm going to do what I want. Like, I don't really care. We'll just see. We'll just see. It can be nothing. We'll just see.

And so literally right after that, he took me to make a wish ball with him. And I literally, our first date was literally with his family at the makeup of small. And I don't know why, but we had such a wonderful time. We literally, there was like, because he was a teenager with cancer, like most people, like in childhood cancer, like, they don't show teenagers in that kind of struggle. There's not in many support groups for that. And so it was literally like him and like one other person and then like a bunch of like five-year-olds. But like there's like this dance floor and this band and like, we're just, like, we're just, like, we're just, like, we're just, the only ones out there dancing.

We're just like slow dancing on the dance floor by ourselves. And like, that's not like me at all. Yeah. And I don't think that was really like him at all either because I'm like, I'd be like, oh, what are people thinking? Are they looking at me? Blah, blah, blah. And I just didn't care.

Yeah. You were very in the moment. Exactly. Yeah. And I just, I think everyone there kind of like felt what I was feeling to because like the photographer like wouldn't leave us alone there. Like was just like taking all these pictures of us just in his family. It was just, or they are.

I'm still very close with this family, and they are some of the most wonderful people on this world. And it was just so wonderful. It was like he wanted to do everything he could to make me feel happy and appreciated. And like, I remember he held my hand, and I was like, oh, my God, I'm going to faint. And immediately after that, he literally texted me into. told me he loved me. And I was like, and I was like, yeah, that's fair. Like, it was like one of, now I would never, ever do that. But like, given the circumstance, I'm Anna Garcia, host of True Crime News, the podcast. Every week, we bring you in-depth coverage on cases making headlines,

as well as those that go under the radar. Tune in for murders that defy explanation, mystery seeking exploration, and shocking secrets that will leave you breathless. Each week, we honor the victims by going beyond the salacious in our search for justice. Crime never stops, and neither do we. Listen to true crime news available now wherever you get your podcast. Stances? I feel like it depends on the situation. And anybody can say, oh, it's too soon to say certain things.

But I feel like, too, if you have a certain chemistry with somebody, sometimes time doesn't matter. You know what I mean? Like, it seems like you guys knew. And I think, too, you can love somebody before a relationship because you guys did have a friendship and you really did enjoy each other. there's time so much that like once you kind of said, oh, I like you, I like you too, it kind of just added on top of all the other good stuff. So I don't know. I think that sometimes

you just know and sometimes it does happen sooner than, you know, six months or a year down the road or whatever the time might be. I don't think there's ever a right time, you know, to say those things. Yeah. So I think it's good. I think you guys had good chemistry. Yeah. It was just nuts. Like, because I'm a very practical person. Yeah. I'm like, I like to play by the rules. Like, I like, play it safe. Exactly. I'm just like that by nature, but I just like did not care with him. I was like, I'm going to do whatever I want. I'm going to say whatever I'm going to say.

And yeah, so we were like immediately together right after that. And the pace of our relationship was just unlike anything else. Like it just when even though we were dating in high school, it didn't feel like a high school relationship even a little bit just because he wasn't even in school at this point because he was so close to end of his life. that he wasn't in school. So he had, I don't even know if I said what kind of cancer he had, but he had DIPG,

which is, it's a brain tumor on the back of your brain stem. So like that's where all your like vital functions are. Yeah. So there's a zero chance of survival with that type of,

so do they even do any type of like chemotherapy for it or they just don't because the chances are not there? So the only stuff for it really is experimental. Okay. Because chemo like won't do anything for it. They have like some like new experimental treatment that is like radiation just specifically

to that point. But I don't think it's really, it's like improving, but it's not. Right. It's not curing it yet. So is it's not a common type of cancer or? No, it's very rare. Yeah, it's very, very rare. And no one has survived it yet.

And like even though he would tell me this kind of stuff all the time because he He was very open. And I'm like, I'm like, 16. I'm like, every day I go and see him. He's talking to me about death every single time I see him. Because the only thing he was on his mind. He'd been thinking about this since he was 14. And like, it was very shocking to me at the time.

And I was like, oh, let's not talk about that. Like, you're not dying. And he's like, no, I am. This is what my funeral is going to be like. I want 70s rock music and I want pizza there and I want it at this church. And I want this and I want that. And I'm just like on the highway driving, like shaking. because he's literally planning his funeral out in front of me.

But it was just, and like that's right. It wasn't like any other, like, I believe you fully can't find love in high school, even not with this circumstance. I don't think it happens a lot, but I think it definitely happens. But this circumstance just was so unlike he wasn't even in school. He's literally talking to me about how he's planning his funeral. Right. And we just still had the most wonderful times.

We would like go to all these diners together and we like, we're both big like breakfast people. Like I need a pancake every single day. Yeah. I don't have one, but I want one. Yeah. And like we would like, we go to the park and he'd be like, let's just lay in the grass. I'm like, why? But like now I'm like, okay, like is there, is that necessary?

But in the moment, like, if anyone else had asked me that, I'd be like, absolutely not. Like, no. But, like, because it was him and I just, like, didn't care. I was like, everything was wonderful with him. Right. We would just sit and he would, like, literally text me one day and he'd be like, do you want to make a pillow fort today? Like, can we have a pillow fort date?

I was like, yes. Yeah. Of course. Just like the, like, sweetest things. Right. And he was just very, like, a tree lover, like, tree hugger kind of person. I'm like very, very into animals, very into nature. Like, more than anyone I've ever met my entire life, just like so genuinely loves it.

And he would always want to watch nature documentaries. I'm like, I don't care about nature documentaries. But just watching him watch a nature documentary, like, insane. Like, it's just like when you watch something that someone loves through their eyes, it's like the funniest, like it's the sweetest thing ever. Right. It brings you happiness too, I feel like. Especially if you care about the person. Exactly.

And it really did. I'd be like, I like the flamingos. This is my favorite part. Like, we got into it. But, like, it was all very hard in a lot of ways that I didn't understand at the time because we would have all these amazing moments when we're together. But in between time, like, he still, he was going to Mexico, like, for experimental treatment, like, every few weeks. So he'd be down there for all.

while or when we were together probably like two or three months into a relationship he fell into septic shock and which is what it's like i don't even know but i know that like it's like it's like deathly like and it happens as people it's like when you fall into sepsis and i at the time i really didn't know what that meant at all but now i know like people die from that like a lot um but i just didn't know so he didn't text me back and i was just like whatever like he was never much of a text or so I didn't really think anything of it. But then he was in the hospital on his deathbed. And so then that kind of put in that, like, that, that's kind of where my OCD lashed

onto that thing of, like, I think everyone I love is dying if I don't hear from them. And, like, I've kind of gotten better with that. But, like, still, like, it's like you, because when it happens and it's true, like, it's something like OCD will latch right on to that. Like, for people without it, like, you will. still have plenty of problems. Right. It's that obsessive thinking and like.

And the fear too. Mm-hmm. Exactly. And like I would just go and see him in the hospital. And like when he was good, he was, he was great. But like when he was like having like a worst, like when he was sicker, like I wouldn't wish that on anybody. Like he just was so frail and just not himself at all.

He had a walker, but like he was such a good sport about everything. Like he had all stickers on his walker and he was like, he needs my skateboard stickers, my, my, my hot ride. I'm like, oh my God, you kill me. But like it just like, and he was sad. Like he didn't want to die at all. But he was also very in an acceptance phase and I for sure wasn't. And as like a 16 year old, I didn't like.

really realize. In the moment, like, I was just living day-to-day. I was like, because I couldn't do anything else. I'm like, I just want to be in the moment here with him right now. And I'll deal with all this, like, the almost dying and then not, and then almost trying again. And then he tells me his tumor has grown. And then he says it shrank.

And then, like, it was a very back and forth. Yeah, very up and down. Very up and down. And, like, when we started dating, he was already past his life expectancy. So GIPG has a life expectancy of nine months. He was at a year and a half when we started dating. And he died at two and a half. So he made it much past his life expectancy, which was great.

But he already knew he was living unborrowed time. And that was horrible for everybody and my family too. so worried about me and I was like why would you be worried about me? Like I'm with somebody I love but like it's like now I have to really separate it

into like what the trauma of the cancer and like the wonderfulness of who Charlie was as a person because he was so so good to me. He even like I was really like I was like obsessed

with a prom. Like, I need to go to the prom. It needs to be this extravagant thing. And, like, I think I put even more weight on it because I knew, like, we wouldn't have a chance for anything other than that. But then, right before, so this is April, I think. So we started dating in August, and, like, this is April. Or March, somewhere around there of, like, 2018.

and he says to me, like, I don't think I'm going to make it to prom. Like, I don't think I'm going to be alive for them because it was just getting worse. And I would just break down. I would, like, volunteer in the special ed classrooms in my high school. Because I'm a speech pathology grad student now. So, like, that's, like, my thing. I would literally go in and I'd sob to the TAs. And they just, like, I was just, like, unconsolable.

Yeah. Because, like, what was I supposed? to do. There's no consoling that. And, um, but he just like randomly one day he, he, he tells me, he's like, I need you to get your prom dress. I need, I, like, get your prom dress altered, because I know you haven't done that. Like, get it ready. Like, you need to, like, be ready. This is a date. I'm going to come pick you up. Like, do my thing. Um, and so he showed up at my house in a limo with a photographer and like through this huge thing for me and like had this professional photographer take all these photos of us. And like he was very into photos. Like he wanted photos

like, like I'm, I never remember to take photos because like I'm a very like right here, right now. And then later I'm like, oh, like I wish I took a photo. But he was like every time I saw him, he'd be like, let's take a photo. Do you want to take a picture? He'd be like have his mom take pictures of us. And I was like, I'm so embarrassed. But so he had all these beautiful photos of us taken. And then took me to this beautiful dinner and this nice Italian restaurant.

And like he at this point is very frail. Like his mom literally had to come with us because she didn't just in case. something happened because it was like she's just like creeping in the back because he was just not like he was not well at all yeah um yeah but he was still he was he knew that this matter to me so much um even though like why was that my concern at the time but you know i'm a 16 year old girl at this time like yeah that was everything the problem was everything to me um and he really put such an effort And then I ate this cramp roulet and it was delicious. And I came back to his house and he had decorated the whole thing for me.

And he just, like, made a playlist for us. And we, like, just danced and, like, had a good time together. It's really sweet. It was the sweetest thing about it. Like, it was so sweet. And then I got food poisoning. Oh, okay, great. So maybe after.

Oh, my gosh. From the creme brule. What? That's nuts. Right? He's literally. Like, he's the one who's deathly ill, and I'm, he's literally in the bathroom holding my hair back as I, like, vomit into his toilet.

Oh, my God. Aggressively. And, like, you know, like, it's not, like, cute either. Like, I have, like, makeup on and, like, you like cry. Yeah. He's just like, like, hi. Right. Just topped off the night perfectly.

Exactly. But, like, why is, like, one of most special memories to me anyways? And now a word from our sponsor. Our sponsor for today is Athletic Greens. If you guys know me, you know that I. take my health extremely seriously. I am a big gym freak. I love to eat healthy and I love to feel good overall. That being said, I have tried to find supplements to just boost this. I have tried energy drinks and coffee and everything in between to just always feel ready to go and just

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and consuming. So if you are looking for an easier way to take supplements, Athletic Greens is giving you a free one-year supply of vitamin D along with five free travel packs with your first purchase. All you have to do is go to athletic greens.com slash insane. That is athletic greens.com slash insane enjoy the episode but then like he's starting getting sicker and sicker and like right after he had he had another photographer for come who is wonderful she used to do these projects for um she would do free photography sessions for children with cancer um and so she had done some for charlie and his family before but charlie like text me one day and was like I really want you to come take these pictures with me. I'm like, I'm not going to like invade this family moment. He's like, no,

like, I want you to be there. And so I was like, well, of course, if you want me to be there, like I'll be there. And then a few weeks later, he, um, literally like two weeks later, he like suddenly broke up with me. And I think it was because, or I know it was because he knew that his time was not much more. He was like, he said anything he had to. He was like, he said anything he had to to like get me to like believe it was for other reasons he'd be like no okay I just don't want to be together and I'm like and it was heartraking it was like because all the stuff happened just weeks before like all these like very special moments very special things and the entirety of our relationship he was very very protective of me he didn't want me to have

to see any of this stuff like if he had morphine drip on Like he didn't want me to come over. If he's in the hospital, he would tell his mom not to tell me. Like, he would tell me all the time, like, Kate, like, I just want to protect you from all of this. I don't want you. And, like, I just didn't care. I just wanted to be there.

Like, it wasn't something that was important to me to be protected. Like, I wish I hadn't been, but, like, he said, like, whatever he had to and we broke up and we were still friends. It was just horrible. Like it was not. Yeah. Because like we were friends for a period of time, but not very long. Like we pretty much like went like straight to like being each other's person.

And he died like a few weeks later. A few weeks after he ended things. Yeah. But right before he, I wish I had it on me, but I have this thumbprint necklace that he gave me. That's his thumbprint and his name on the back. and I gave it back to him when he broke up with me I was like I don't want it give it to your mom like I want her to have it like

and he had her save it for me and his family like came to me after because he wanted to see me I was one of the last people that saw him alive like he didn't want to see anybody at this point in time because he had grown apart from a lot of his friends because they were all athletes like he used to be and talking about all these fun things that they could all do together.

But I kind of related, could relate to him to an extent because, like, I had grown up with the pandas and these hips problems that later turned out to, I just got diagnosed this year with, like, Eleanor Stanlos and Potts, like, these erogenic conditions that caused chronic pain and, like, that was the why. So like I know what it's like to be it in pain and not want to participate with the rest of the world in that way. Like I don't, I obviously will never know to that extent or I'm not comparing the two things, but I. I really a little bit better. Yeah. I could understand a way that his friends couldn't. And he wanted to see me last. And he just like kind of just was like told me that he loved me and that he.

like had this perfect last moment. Like it was like the last day that he felt good before he died. He like saw me. And then, um, he passed away. And that's more so like the grief side of things and me trying to deal with all of that after because like it's, it's an ongoing process. And I know it's so different for everybody grief. And I really have learned that.

And it's also so crazy. how people don't know how to act, especially young people, because, like, they've never been told, like, and even adults. I've had some adults say some really crazy things to me, like, even still. Right. And I was obviously devastated. And, yeah, like, I'm literally, I'm stitched on. He had a natural burial because that was so important to him. So he's literally, it's like this like quilt and all his people he loved stitched our names on it.

And then it's just like straight into the ground like no coffin. So it's like a kind of like back to the earth type of thing. And it's like this beautiful ceremony where they grow all these wildflowers over you. So it's this really beautiful thing that was perfect for him. Yeah. Because again, he was like this big, like earthy. He literally he scouted out this spot, literally like sent me a picture with a lady who owns the graveyard. He's like, look at me and my grave lady.

I'm like, stop with that. Yeah. Stop with that. That's too much. But, yeah. So it's not like I didn't eat. I didn't talk to anybody. Like, now I'm going into my senior year of high school because it happened right

that summer before. And I all of a sudden, like, like, I'm a very, like, happy, like, chatty, like person. Like my friends always say, like, I have resting smiley face instead of, like, resting fitches. Yeah. But I was just miserable, obviously. I'm devastated and I didn't understand why someone so wonderful had to die for literally no reason.

And everyone goes, like, oh, my least favorite thing to hear ever is everything happens for a reason. Right. Because I'm like, what is the reason? Like, tell me the reason for this. And I understand, obviously, I think certainly some things happen for a reason. I just don't think that was one of them. And so, like, that is just, like, the most, to me, that's, like, the most inappropriate response ever.

I'd have, like, these, like, grown adults come to me and be like, he's in a better place. I'm like, is he? Right. Because, like, shouldn't he be here with his family? And I want to mention, too, you know, I think that the grief after the fact is one type of grief. But then you still, I mean, no matter what age you are having to go through that, that's going to take a toll and be really hard for anyone. But I think, too, you being so young and like your brain, like we were saying before, it's like at that age, you don't even really, you can't even grasp like actually what's happening.

And I think that naturally in moments like that, the main thing that you're going to be thinking about is, okay, we don't have much time together. All I want to do is spend as much time I can with him, you know, make him happy. He makes me happy. And that's, I think that on the outside, that's what, that's all that we think we're thinking about. But in actuality, the situation and the reality, the situation. and the reality of what's actually happening takes such a toll on you without you even realizing it. You know what I mean?

Like during even, even like the moments that you guys had all these good times, it's still a lot for somebody to take on and handle and even process. You know, that takes so much time to actually process and go through. So it's like, you know, after the fact you were going through the grief of actually losing him, but then you still probably didn't even process what all just happened, you know, because that's so much for even for you or anybody to deal with and go through, especially at such a young age. Exactly.

And I didn't realize how traumatized I was being through this whole process because I was, again, like I was just, I was there. And it's very emotionally draining. Like you might not even realize it, but it's like everything that's happening you almost put on yourself even if you don't realize it because you're thinking, you see all these things that are happening and there's nothing you can do about it. And it's not the norm, you know what I mean? For high school students, I have to go through.

So it's like it's very hard, I think, on anybody and especially just on your emotions and your heart. It's not an easy thing at all. No. It certainly wasn't. I processed it for years after because these are all these things and I never realized or processed. And I found out like I think a year after he died that I had PTSD. And I was like, what do you mean I have PTSD? Like there should be no reason I have PTSD.

and they're like and my therapist was like Kate like this was a traumatic event if you realize it or not this like going back like I would have these I think I honestly had it all the way through and I just didn't know because I'd have these horrific panic attacks all the time um I was just like so distressed all the time like just shaking I was every day I was afraid that he was he was dead um and it was just horrible It was ungodly horrible for everyone that was close to him. And I just like didn't realize, and especially going into it, like, I had no idea. I didn't think that through. I just was like, I'm obsessed with him. He's the best person I ever met. Like, I have to be with him. Like, that was all that mattered to me.

And I would do the exact same thing over again. I think, honestly, for me, that it was better than I didn't think about it and that I didn't know all this after stuff. because that has nothing to do with him as a person or his circumstance has nothing to do with him. Like he was nothing but wonderful. Truthfully, like nothing but wonderful. Like, he always, he'd always say, like, he doesn't like when people, like, glorify people who are sick or people who are dead.

So he was not a perfect person, but he was pretty damn close. Yeah. He was just a wonderful person who I enjoyed immensely and love so deeply. But, yeah, I didn't think that through it all. I had no idea what I was going to be like. And then right after, like, I lost, like, a ton of my friends because my people didn't want to be around me because, like, they had no idea what to say to me. Like, I just, like, grew with this dark sense of humor and, like, because that's how

he was. He would, he would, like, make these just extremely out of pocket dark jokes all the time. And so in my head, I'm like, that's how you process grief. And so that's still how I. I do it. But like now like I know how to advocate for myself and for other people in terms of grief and I can explain it to people. But at the time I couldn't. And so I like lost and like my senior of high school and I have like practically no friends because or like I don't know that we weren't friends but like we weren't close anymore because they just didn't understand. And it's not their

fault. They were children also. Like we were all children in this and like they, they're don't know what to do. No one trained them on how to be a friend to somebody who just went through that. Exactly. Yeah. And that's what a big part of the reason I like to talk about this is because, like, I am not the person to tell you how to deal with having cancer because that was not my experience. My experience of losing someone to cancer, someone very, very close to them. Like, I can help advocate for like the, what do you say?

What do you do? The grief aspect. Exactly. I feel like the grief aspect from your perspective, but also like you were saying from even maybe an outsider's perspective, like that somebody that might be your friend or, you know, just like it acquaintance anything. That's what I was just thinking before you said it is. Like I feel like that is going to be a big thing for the people listening that could really

help and even just feel hurt too because even if it could be losing a parent or losing a friend, you know, especially if it's around the same time frame as you were, you know, in high school or, you know, pretty young. I feel like this is a good episode for people to really feel heard and related to. And then like I said, too, just if you are a friend of somebody who's going through that, how to deal with them and help them too and hear them. Because sometimes all people need is just somebody to listen. It's not even always about advice or or helping them cope.

It's just literally just being there. But it's like at that age, I think it's so hard for people to do that because you're young. And you, even for a friend, it's like, how do they process what their friend is going through? You know, so it's difficult from all angles, too. Exactly. And I don't think I had very much sensitivity towards my friends at that time. Now I 100% do. I'm like, how on earth would they have known?

But at the time, I was better and angry. But, no, it's so, so important. and yeah, like, and from all these different perspectives of what do you say as a friend, what do you say as a parent, what do you maybe not say? Yeah, what do you not say? I more so know what to not say. Don't say they're in a bare place. Don't say the reason.

Those are the big two. No, no, no. Oh, I don't know. Like there's just so many like weird things people say to me or I get I used to get really pissed like I had or even recently like this year like Charlie so I'm 22 now he died when we were 17 so it's been like four years um like four and a half years and just this year I had a girl I went to high school with who really didn't really even know him and like moved before this really even started happening. and text me because you heard something about someone in his family and wanted the inside scoop. I was like, what's wrong with you? You don't know him.

You don't love him. You don't care about him. Why do you think I'm like your inside source for like this family's trauma? Like absolutely not. Or like, I don't know. There was a lot of like people that would like be like, like, he was my best friend. I'm like, I was there. Right.

where were you? Like, I saw you. Like, um, and like, I understand like having a hard time being there during something like that because believe me, I get it. I was not always pleasant for sure. Like that was very traumatic at a lot of times, but not had nothing to do with him at all again. But the pretending of like, yes, we're besties, like, love you forever, brother.

I'm like, no, no. That, like, rubbed me the wrongest way. Yeah. Yeah. So even stuff like that, just trying to, like, advocate to just, like, like, don't say stuff like that. And, like, or that grief is messy. And, like, not every moment is going to be perfect. Like, the fact that we broke up right before he died.

And, like, I dealt with that, like, processing that forever. It was like, he never loved me. He hated me. Blah, blah, blah, blah, blah. But, like, literally his family was like, Kay. Like, he was just so sick. Like, it was family. I would met family members at his funeral.

I had never met before in his life in my life. And they knew me by face. It called me. They're like, you were so important to him. You were so special to him. Like, allowing yourself to grieve and feel the way you feel, no matter what kind of messiness is going on because I almost felt like I wasn't allowed to grieve.

Yeah. And, like, there is still, to this day, like, I miss him all the time. I think about him every day. Like I'm in a place where I accept. I don't want what has happened to have happened, but it did. Like it's too late for that.

Like, I accept and I, I have built such a beautiful life myself anyways. And I, I love doing stuff that I think would have made him proud. Or like, shortly right after he died, I gave a TED Talk. Like literally within six months, I was like, I'm giving a TED talk. Like, again, another one of those take the risk type of things.

Or as I like, I can't, I can't die and not have given a TED talk about this. And like what it means to really like love fully and love openly and take every risk despite all the messiness and consequence side of things. And a few years later, I literally came out with, because throughout this whole. process of me dating him to like years after he died. Like I was writing because coping through writing is like one of the best things ever. And like it doesn't need to be good. Literally just like I just like type like I'll be up in the middle of the night and I'll just think of something or upset me or like in the moment like I couldn't express myself

in a way that made sense. So I would just write all the time. And then I looked and I had like 100 pages of this poems and essays and all. all this stuff. So I put it together. And I'm like, this is a grief memoir of like what it's really like, like it's not very like a raw side of it. Exactly. Not perfect. Exactly. Because like I'm not going to do everything right. And I'm, I didn't. I 100% didn't. But I showed up for him and I loved him fiercely. And I told him I loved him every day into the end. And he showed up for me. He really, really did. And like when he did not need to and when he had nothing to give, literally nothing to

give, he showed up for me. And yeah, so like this messy grief, I don't know if I'm making any sense at all. No, you are. And like the like going in and out of stages, like there's no like seven stages of grief. Like yes, those are all stages. But for me anyways, like it's the most like random order ever. You could have, you could wake up and feel good and have a good day. And then the next day you feel like you're back, like it just happened all over again. Like there is no, I agree with you. There is no like right process. Everybody handles it differently.

Number one, like you said in the beginning. And number two, you like you could literally have good days and bad days. No matter whether you're five years into it or one day into it, which is, it's just normal. It's part of it. Exactly. And it's just how it goes like there. I always like to say like, I'm. always moving forward. I'm building my life around this great love, I'm this great love and this

great loss and I'm always moving forward, but I'm never moving on because we're just no, I think moving on is just something that doesn't need to happen. Like this happened and it was wonderful and it can stay and everything else can go around it. Like I'm still going to find someone else that I love fiercely and it's a event that can understand that this was this is important to me and that this is all stuff that I care about and advocating for childhood cancer and grief and that Charlie was a big part of my life and that that is a love that's always going to be within me but I can you can I don't think love is finite like why can't you love someone who is lost and also love other people why can't I have days where I am just devastated by this loss and also like, be girl bossing it up.

Like I'm in grad school a year early. Like I'm going around. I'm doing all my things. And like that's great. But like I also like have days or I literally like will wake up in the middle of the night and look through old pictures and sob. And like is that frequently anymore? No, but probably once every two months.

Yeah. Like as a cycle, like it just kind of happens. And that's fine. And like also like they, people always like look at you if you're crazy. If you like, you like talk out loud to them. I feel like that is just such a beautiful way of connecting. And I'm in a car by myself driving because I have this little Prius. Her name is Polly.

She's adorable. Polly the Prius. Polly the Prius. She's incredible. And Charlie would always make fun of it. He was like, what is this? I'm like, don't hate. She's beautiful.

No. And so if I'm alone in my car, I haven't done it in a while. But once in a while, I'll just talk to him and I'll be like, this is what's going on in my life. Like, look how cool I am with this. Like, what, like, I wonder what you're doing over there. And, like, staying, like, so just talking aloud. Like, it's like, what's the problem with that? It's just.

Yeah, and if that helps you and works for you, that's all that matters, for sure. Exactly. And like obviously that won't work for everybody. Everybody has their own things. And some people don't want to talk about it at all. And but I think a lot of reason people don't want to talk about at all sometimes is that they feel like they can't or they shouldn't or they're going to get shut down by other people. So you, you were in therapy afterwards, right? Okay.

And then are you still in therapy now? Mm-hmm. So I, like, it's funny because to anybody else, I would be the person with more. health problems, mental and physically, except for him. I've been in therapy literally since I was eight for like this OCD and anxiety and PTSD. Like it's just been common, PTSD is new, but the rest has just been a common theme in my life. And it's always been bad. I also have a skin picking disorder.

I have dermatillomania. So like my like anxiety or my OCD and my obsession will literally manifest itself and to me like ripping my skin apart to like, And then that makes you feel so shameful. What did I just do? Like, I'm hideous. And then you hate yourself. And then you, I need control again in my life. And then you do it over again.

So I've been, I've been in therapy pretty much my entire life. I've always been medicated. Because I need to be. And that's how I can function. And that's fine. And like, I'm always going to be a person that needs more medically. Like, I have to go get trigger point injection shots. for my connective tissue disorder like that genetic disorder I have.

Or I have pot. So my blood pressure goes down and my heart rate goes up, especially when I change positions or if it's hot or sometimes just randomly. And so my eyesight will black out and I'll like pretty much faint very frequently. Like I'll just get out of bed. I'll go right back to the floor. So like I'm always going to need more health stuff than a lot of people. But like that's fine.

Like, sometimes you just got to do what you need to do to get by. Yeah, so I've always been in therapy, and I've always had to have, I've always had to deal with a lot of, a lot of things like that on top of, like, all these circumstantial stuff. And then, like, normal stuff. Like, like, even just now, like, I always, like, I'll have, like, crappy guys at the bar be like, oh, like, you're so tall, do you, like, play basketball. I'm like, ew, like, no. Like, just, like, normal stuff. stuff like that additionally. I'd have to have all these like strange things.

Yeah. And then what is it? I wanted you to touch on to a little bit of what you do now because I thought that was really interesting. And I feel like it obviously ties into everything that you experience. So I feel like it's an important thing for you to talk about. Yeah. So I'm in grad school for speech pathology right now.

And I love it. It's the most wonderful field in the whole world. And it is so hard. It's so, so challenging. But I've been working with different individuals and disabilities since I was like 16. And this is a big part of what got me through after losing Charlie because like these are my people. Like when I get to work with these different populations, I work with people who are nonverbal. I work with people with all sorts of developmental disabilities.

And now in grad school, I've really worked with everybody. Right now I'm in the schools. So I'm at in Stanford and just all these different kids with we have I want to select a mutism. I have some with articulation disorders, everything. And I had old people at dementia, aphasia. It's such a broad field of communicating, just getting what you need to get across and how you can do it best and swallowing also. So not like, so how you can swallow safely. So that's what I do.

And I love it because obviously I'm chatty. And I think communication is one of the most important things in the entire world. Yeah. And so it's become such a passion of mine. And it really, I love it so much because you can actively see right in front of you what the difference you are making. Because like when a kid gets it or when an adult gets it, or when an adult gets it, it and like all of a sudden like they just start getting something right that they were never getting right before it's just the most incredible feeling ever or I have a patient that so aphasia

is after a stroke there's all different types but one of the major problems is word finding and like like disorganization of thoughts like there's a lot of different symptoms of it and a lot of different types but anyway this particular patient was having really hard time making um uh schedules and his phone notes just couldn't get the order of it down no matter what he did and we finally got a process that worked for him and then he came back this semester

and has different girls and the other cohort and he was doing it immediately they told me they're like, what, I don't see a problem with that he doesn't need help with that anymore like you fixed it and like that so functionally changed his life

where he could now be at all those appointments on time knows where he needs to be, can see it visually. Like, it just helps him so much, like something so small, like being, like, your own calendar appointment. It's so important. Yeah. Exactly. And then did you say you work with children also?

Okay. And what do you do with that? Like, with the, was it, did you say with children that have had, like, family with cancer? Is that what you were saying before? Oh, yes, yes. Yes. I've done that, too.

Okay. I've done a lot of the thing. I'm a little all over the board. Yeah. Yeah. Yeah, I used to volunteer at this camp for children. They do a bunch of different things. It's camp good days.

It takes place in upstate New York, which is where I'm from. And it's this beautiful camp. They have all different weeks for all different ways cancer affects you. And so the week I used to volunteer out is called Teddy's team. And it's for children with cancer, but there's weeks for people, for children that have lost someone to cancer. there's a week for children that have siblings with cancer. There's a week for that have parents with cancer, all sorts of different weeks for everybody.

And it's just you go here and you just love the shit out of these kids essentially. Like you just like give them all the support and all the love and just let them talk. Like just like you were saying, like just listening like means so much to these kids. And it's it's so wonderful. and I did this thing, my senior year of high school, where we raised a ton of money for this camp. It's called, like, it's for, like, dance marathon. I know a lot of schools do a similar thing.

A lot of colleges do, but my high school did it for whatever reason. And we raised, like, $100,000 for this camp. And, like, I'm not, like, I don't know. Like, it's, I don't, I'm not someone who likes to go out of my box. I like to do my thing. Like, I like to be structured. And this was very out of my comfort zone. because it was like with all people I didn't know and this like or I knew but like wasn't

friends with like it wasn't my crowd at all um but like for this cause like it it meant so much for me and I'm so glad that I I did that and I um I in undergrad I was in Tri Delta sorority exclusively because I wanted um to work with St. Jude um so I always try to keep that stuff with me the best that I can yeah and I was going to say too I think feel like obviously your experience was so tragic and was something horrible that you went through. But at the same time, I feel like that allows you to be that much more open to these other kids and people that have gone through something similar or even might have cancer because you've experienced that firsthand with somebody that you loved so much.

So I must feel like that makes you the perfect person to help other people that are going through that because you actually can relate and understand it because I think that, I mean, this is with anything too, you know, that people can have a job or volunteer with something. And they can want to do it and they could be good at it. But I think that there's another, there's something more, I don't want to say more empowering, but there's something different about somebody that really has experienced it and understands it because I just feel like you hold it in your heart and that really shows through when it comes to helping somebody else that's going through it or has been through it.

So I think that it's really empowering and amazing that you do volunteer and you help children and you help people in general just in so many ways because I feel like you just have a warmness to your heart because you can understand what it feels like to lose someone you love and in such a sad, unfortunate way too. You know, like you basically, I always say I think something that's really hard is to have to watch someone you love just kind of decline. when they are such an amazing bright light. You know, and I think that it's amazing too because in a way I think that seeing Charlie,

seeing Charlie kind of hold his strength and brightness through such a dark time in his life kind of gives you strength for like, you know, like if in any place in your life, you might be going through something. You can kind of remember and tap back into, well, if he could be strong when he went through this, I can be strong. So I feel like there's so many little things that, and big things that you can take from, you know, the tragic experience and just make it bright and happy and help yourself and help others, which it sounds like you do so often and so much. So even coming on here and obviously

you're going to help so many people that are just listening, even if it isn't the exact same experience, it's still going to touch so many people and make so many people feel heard and understood and even just understand what somebody might have gone through and, you know, what he went through, but also what you went through. Like I was saying before so that people can maybe even just have more sincerity and not because I think it can be frustrating, especially if people don't understand. So maybe just to like how people let their walls down and be like, okay, this person's going through something, I just need to be there and listen and just let them know like I'm

here to support them if they need it. So I think it's amazing, everything that you're doing and even like I said, the fact that you came on here to open up and share your story. So I think it's great. Thank you for much. Of course.