00:00:00.840 - 00:00:08.610

Okay, thank you for meeting with me. So much. First, we're gonna start with something really easy. What's your name?

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Um, Piper Jones. Okay. And if you want to, you can share your major and your pronouns and your age.

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Yes, I am, um. What did I forget? I'm 20. [Okay.] I'm, uh, I use she/her pronouns, and I'm double

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majoring in film, TV, and media studies and business administration, management and leadership. Oh wow, what a mouthful. I know.

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That's wonderful. Um. Can you tell us something silly or fun about you?

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Um, yes, my dogs are famous on Instagram. Um, they have 45,000 followers. They do brand deals and modeling, things of that nature. I'm gonna have to follow your dogs [You should] after this. [That is incredible]

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@wilsonthelabragoat Wow, [[crosstalk]] shout out wilsonthelabragoat. That's amazing. That's my fun fact.

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How about you? A fun fact about me? Yeah, what's your fun fact? Um, everyone calls me Pickle, except I've never eaten a

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full pickle in my life. I don't think I have either. I don't like them. That's a good name.

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Thank you. I think Piper is a good name too. Thank you. Amazing.

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It's after an airplane. Um, oh. [[laughs]] Not it turning into a mukbang. Okay. What is your relationship to LMU, aka like?

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Are you a student? [Who am I?] Like, do you live on LMU campus? You can take this question however you want. Yeah, um, I am a LMU student.

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I've been here since I was a freshman. I lived on campus my first two years and now I live off campus. Um, I like it here, it's cool.

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The film school is great. LA is great. Do I need to keep yapping? No, that's perfect.

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Okay. Um, in addition to that, how did you get here? And I mean that both literally and figuratively, like literally how did you get here?

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Like did you drive here from wherever your home city is or did you fly here? And then also, how did you get here? [Yeah] Like your application process, your decision of LMU?

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Were there specific things, specific things you were considering when joining this community? Yeah, um, so I'm, I'm a film major, like I came here for film.

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Um, I, my parents want me to get a real degree and so they were like, you have to apply to business schools only. So I applied to business schools that were at top

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ten film schools and LMU happened to be on that list. Also, um, I'm the third person in my family to go here.

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So, my aunt went here, undergrad and masters. My grandpa got a master's in theology here, so everyone was super excited, um, but yeah, being from Seattle, I-- The first time I came here, I drove.

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It was a crazy road trip because like all, you know, like the baby shower fires, those were going on like the wild, [Oh, yes!] like yeah, [the wild, the gender reveal parties, the quote unquote gender reveal parties] Yes, not baby shower, yeah, the like the-- yeah, those parties

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like how they started the fire and [Yes!] it like destroyed a lot of Northern California. [Yes] So it was like during that time and we like brought the dogs and like brought all my stuff. [Your famous dogs] My

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famous dogs, Wilson and Hightop, and um they, it was like fine, but then there were a lot of barriers, so there was like a tree on the ground, um, and then we had to like just chill there

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for a while. So, we're driving until like 2 a.m. and then we get woken, woken up around Petaluma and by a fire alert and they're like, you have to evacuate immediately and

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so we had to dodge fires the whole way down. I was like, God doesn't want me to go to LMU. [That's so wild.] Right? But yeah, no, I, I mean, I've, I've always liked

00:03:55.180 - 00:04:05.460

it. Um, LMU is not my top choice, but as, [me--] [[laughs]] as most film students, um, yeah, so I was like, oh, USC, but I don't know, I kind of like being

00:04:05.460 - 00:04:12.910

a big fish in a small pond. Um, sorry to call LMU a small pond, but it's a small pond, so. It's been fun, I think.

00:04:13.760 - 00:04:26.200

I think it has been fun too. [Yeah] Ups and downs like everything. [Of course] Um, speaking of ups and downs, how would you describe yourself in, in relation to disability?

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What a great segue. Um. [Thank you.] Yeah, I would say definitely lots of ups and downs. So, should I just lay it on the table?

00:04:35.530 - 00:04:49.110

Lay it all out. [Lay it all out] Okay, so, um, when I was 17, I got diagnosed with chronic kidney disease, and this was a shock to me, not a shock to my parents, um, to go

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way back, like, oh, freeze frame, how did I get here? Um, when I was born, um, I was like low key over baked, like I was like 2 weeks overdue

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and I think that caused a birth defect where my um. It was like the tubes of my bladder wasn't properly connected.

00:05:08.280 - 00:05:20.100

So, when you're supposed, when you pee like flushes toxins, this is not a very glamorous disability. When you pee, it flushes toxins from you and that did not happen for me, so I would get sick

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constantly. I got like, I think I had like an E. coli infection from that just because my body literally didn't filter anything out.

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Um, and so I would get constant UTIs from like 8, I think it was 8 weeks old to like 8 years old, yeah. And um the doctors were like, babies can't get UTIs.

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And so they did like, if you've ever seen House, like the TV show where he-- [I've not.] It's like a medical procedural show where he like tries to figure out what's wrong with people and it takes the whole episode because

00:05:53.140 - 00:06:02.430

they're like, it must be this, and then it's like, oh, there was information they were hiding. I was a baby like I wasn't hiding information, but it was kind of like that, and so one like

00:06:02.430 - 00:06:16.190

the first doctor I saw, she um. She ruled out a UTI immediately. So, then all future doctors were like, oh, well, they've already ruled out UTI but that's what it actually was.

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And so I had this, these symptoms that just kept getting worse. I would go into like septic shock a lot and stuff.

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Um, obviously I didn't die [[interviewer grunting]] but it would be it would be really bad. I spent a lot of time in the hospital. I spent a lot of time just generally out of

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school and everything, um, until I was 8 because I was super sick. And so, one time when I was 8, we were in Disney World and I used the bathtub in our

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hotel and it hadn't been cleaned properly. Like my mom used to have this whole bleaching process before I used the bath, um, because literally anything near me would get me super sick instantly.

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Like, even to this day, my immune system doesn't do what it needs to. Um, so, Anyways, I used the bath like any child would in a fancy hotel in Disney World, and the

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next day I was super sick, like I ended up throwing up and my mom was just like, we need to go to the hospital stad, and she was like, she's gonna go into she's gonna go septic and um

00:07:16.430 - 00:07:29.150

the doctors were like, wow, how'd you know that? And so, I was in the hospital for 5 days in Florida around Christmas time, [[gasps]] so you bet I met the Avengers, um, like Santa came, like I got a

00:07:29.150 - 00:07:41.990

like Sonic the Hedgehog like toy set, um, I played these cool Wii games with like kids who were in chemotherapy and stuff cause they had me in like the, the intensive ward, like the intensive children's hospital ward, um.

00:07:42.320 - 00:07:49.750

And you know, being 8, like I didn't realize at all really what was going on. I watched 17 again. I remember that.

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I haven't seen it since. Such a good movie. I've, I'm just, I kept falling asleep, so I'll have to rewatch it. That's--

00:07:56.630 - 00:08:09.300

You have to. [I'll take your word on that] Um, yeah, so after that, my mom was just kind of like, this is obviously not great and I think talking to doctors in Florida, she was able to get

00:08:09.300 - 00:08:19.670

like a second opinion kind of and they were like, OK. We'll do some investigation. So I got with a specialist, um, I've, I think

00:08:19.670 - 00:08:31.690

it was around age 8, and that was a urologist at that time, um, and [What's a urologist?] I think it's-- [Sounds familiar] Um, it's like the, the bladder doctor. [Okay]

00:08:32.570 - 00:08:42.860

Yeah, so it's a specialist for, that's [[crosstalk]] what I'm saying this is like a very embarrassing disability like my whole life because, so I ended up when I was 9, I had to have, they gave me the choice of like

00:08:42.860 - 00:08:55.890

you can either get, again, this is me recalling like overhearing an adult conversation at 9. So it was like a sugar injection of some sort. I don't exactly know, but they were like, we're gonna

00:08:55.890 - 00:09:07.640

see if we can seal your bladder tubes, or they were like, we can do a bladder reimplantation surgery and that [I've heard of that] sounds crazy, yeah. No, I've heard of that.

00:09:07.970 - 00:09:15.660

OK, well I have one. Oh! [Yeah] Oh wait [[crosstalk]], actually, I heard of a stool where they put someone else's stool in you in surgery. [What?]

00:09:16.550 - 00:09:22.590

So you had the, the, you had a number 1 and not a number 2. Why would they put someone else's stool? You mean, like a colon part?

00:09:23.150 - 00:09:28.310

No, literally someone else's stool. It's the same thing as what happened to you, right? They put someone else's urine in you. No.

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Oh, I heard you wrong, [No, no, no] but they, no, this is a real thing. Sorry to segue. No, please.

00:09:34.200 - 00:09:44.830

Um, it's a surgery where like someone's like not processing their poop correctly, so they literally put someone else's poop inside them and-- [kind of like cultivate fresh new poop?] To be very fair, I did hear about this on

00:09:44.830 - 00:09:49.110

a social media platform. That's ok. So, but I, I'm gonna look it up after and see if it's true. [Okay]

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And I think it is, because and it like helps them process their own stool better. [That's amazing] Or maybe I learned it in class. I don't know, but [Okay] go back to your thing.

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Yeah, no, so mine is not putting urine. The bladder, it's like an organ, you know, it's like, [Yes] where the pee is stored and then [Yes] like the kidneys like help the--

00:10:08.990 - 00:10:17.960

I'm a film major. Um, I don't know exactly what it does, but it she wasn't working and so like [No] the tube that connected the bladder to the kidneys was not working and so

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they were like, OK, we're gonna do. This thing where they take, they removed my bladder and they like rebuilt it and then they put it back in.

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[Oh, like Legos] Like Legos, yeah. So, I don't know again exactly what they did, but this guy, he was like a really good surgeon and he did it.

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He's now the CEO of like the whole hospital. [Oh, wow] And so, and he became it like two years after. So boss and CEO [Yeah, no] fixed your bladder. No, it's crazy because whenever I mention like who did

00:10:46.410 - 00:10:55.610

my surgery like to anyone, any doctor in the nation I've seen, they're like, Guy Hudson, like [[gasps]] he did your surgery? He's like, he's like a famous and I'm like, yeah, like--

00:10:55.780 - 00:11:08.330

I bet not as famous as your dogs though. Probably not, not 45,000 Instagram followers, but no, whenever I mention it to that niche medical field, they're like, you have his bladder and like I do have his personal bladder,

00:11:08.400 - 00:11:16.440

yes. [Aah!] Um, yeah, no, but he was cool, especially to like child me, he would be like, 'Can you bring an awesome card next time we visit?'

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And then I don't think I ever saw him again because he was promoted to CEO. Like he wanted me to get like an ID card that was like that said awesome on it because I

00:11:24.200 - 00:11:34.120

was awesome. And he would be right, and he would be right. Of course he would be ['cause you're awesome], yes, but yeah, so that was cool, but then they were like, oh, we're gonna.

00:11:34.680 - 00:11:43.400

Since he's getting promoted to CEO, are you good? You look inquisitive. [Yes, I'm, I'm-- My contacts are like adjusting weird] Oh, okay, I'm sorry. I didn't know if we were like, if I need

00:11:43.400 - 00:11:50.650

to stop yapping. No, not at all. [Okay] Keep going. OK, yeah, so, um. Anyways, he, it's so refreshing to be able to start

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like from the beginning and just like talk about this because I give people short versions all the time, but-- I'm a sucker [Yeah] for a long version. [I--] I love a long version [love a long version]

00:12:01.450 - 00:12:11.650

I love all the details because there's just so much. Yes, and you said you were officially diagnosed at 17, or-- Yes, but these were like long standing issues. We're getting there. [Okay]

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We're still at 9 or 10. [Okay] I think we're [We'll make our way there] we might be at 11 at this point. But yeah, post surgery [brand new bladder, woke up with brand new bladder] Brand new bladder.

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It was very traumatic to recover from like, like physically not mentally because like um I was like peeing blood and stuff. My aunt had to come up from Sacramento and like

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because they were like, she's not smiling anymore. I was like [Oh!], which sounds bad, but I was a happy kid, I think, um, yeah, and then. Why I say this was embarrassing is because when I

00:12:44.330 - 00:12:57.250

was in elementary school, um, whenever I would laugh, I would pee, like I would just lose control of it because it had, you know, it's like re-implanted [Yeah] and stuff, so that sucks.

00:12:57.450 - 00:13:04.730

People should have took it as a compliment like through that laughing. I was laughing so hard like I peed. Yeah. [Yeah] No, it was, it was just weird because I got

00:13:04.730 - 00:13:16.580

used to like learning how to like go walk around school with like. Peed pants and like [Mhm], tying my sweatshirt around my waist like pretty much up until high school, this was an

00:13:16.580 - 00:13:23.900

issue. Like I even, at one point. I haven't thought about this in years. At one point I saw a specialist for like a

00:13:23.900 - 00:13:32.720

pelvic floor strengthening and it was mainly for women who had like had children and lost control of it. So it's weird to again be like, I think I was 12 at this point.

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I was in middle school. It was extremely embarrassing and also to like have my dad take, because my mom was a pilot, so she's gone a lot, so like.

00:13:41.270 - 00:13:53.050

My dad acting as a single father, taking me to these visits about how my pelvic floor functioned and everything. That was interesting, so [Mhm]. Yeah, that was, that was just hard to grow up

00:13:53.050 - 00:14:02.420

with. So anyways, um, they tried to have me do yearly visits with this other woman. Um, who would later be my nephrologist at age 17,

00:14:02.690 - 00:14:15.490

so-- [What's a nephrologist?] That's a kidney doctor. [Oh] So, so now it's not just virus, it's kidneys. So anyways, put that all on pause because my mom's like, she's good, we fixed it like they were just

00:14:15.490 - 00:14:28.320

doing yearly ultrasounds, like, yeah, she's still good. Um, so yeah, now I'm like 12 and I get chronic migraines. Um, and these were just absolutely debilitating like I would.

00:14:28.690 - 00:14:38.880

I would throw up, I would get the aura, I would stop being able to see properly, like things would get blurry. Um, I genuinely don't know like how I functioned with

00:14:38.880 - 00:14:44.710

them, so I missed a lot of school because of that. Um, again, if anyone is sick near me, I get sick.

00:14:45.320 - 00:14:53.370

um. What else? Oh, when I was 16, yeah, so that that progressed like every other day migraines forever.

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Um, when I was 16. My, I played water polo. I've always been an athlete and I got a concussion. Well, so I got, I got a concussion, but I

00:15:04.030 - 00:15:13.670

was not diagnosed because I was a stupid 16 year old and then I played another game a week later and I got an even worse concussion. [Oh no!] So I had to go to the ER and from

00:15:13.670 - 00:15:26.150

that point on, I lost the ability to sleep at night, [Oh!] just like sleep through the night and it's because my brain just like never healed and so I had all these weird symptoms, um, all neurological symptoms.

00:15:26.450 - 00:15:38.810

And it was like, okay, what-- what is this? When I was in any situation of extreme heat or extreme cold, so anything that wasn't like Seattle, Washington, which is very neutral, um,

00:15:38.820 - 00:15:47.850

like 60 degrees all the time, um, I would turn red. Like one time we were in a too cold of a pool for swim team and I would just be

00:15:47.850 - 00:15:58.530

bright red and then same thing like I would get these heat rashes um whenever I went to the sun for too long, and I would get like kind of like cow spots of red all along me.

00:15:58.660 - 00:16:04.640

Um, yeah, just. Super weird things. I was like, OK. I kept trying to be like, Mom, can I see

00:16:04.640 - 00:16:13.850

a neurologist, which is a brain doctor, because I got to find all these terms. [Um] Yes! [Yes] I actually knew that one [You knew that one?] because that like major. Okay, I feel like that one's pretty common.

00:16:13.960 - 00:16:24.670

Yeah. Yeah, so, um, I saw a neurologist, I saw one, I think around 16, and I was just like, oh, and this would be.

00:16:26.250 - 00:16:37.070

Before COVID slash COVID, that this was happening. So this was like late 2019 and she was like, oh, it's because you don't drink water, like it's cause you, my mom, my parents have always been vegan, so

00:16:37.070 - 00:16:47.120

they're like, they believe like, oh, all problems can be solved through veganism. Um, I am now a vegetarian, like I don't, I don't entirely disagree with them, but I was like, yeah,

00:16:47.310 - 00:16:56.080

I, I don't think so, Mom. I would get meat shamed occasionally, so she was like, oh, it's because you eat meat, and so I was like, I would go through periods of like, fine, I'll

00:16:56.080 - 00:17:08.400

be a vegan for two weeks to prove to you that I am still very sick without eating meat. And yeah, I passed that test and this at this point, this is like maybe a month into COVID, and

00:17:08.400 - 00:17:18.450

she was like, alright, I guess you can see a neurologist. Um, so I saw a different one. And we go into the, you know, I go to this

00:17:18.450 - 00:17:30.180

visit, um, they strap the blood pressure cuff on me like they do for all doctors visits, and they're like. This is messed up. This machine's messed up.

00:17:30.510 - 00:17:39.020

Well, I guess the reading's bad. You'd be dead if that was your real blood-- blood pressure. And um, I was like, okay, interesting.

00:17:39.190 - 00:17:49.880

And then funnily enough, I realized that this happened, you know, different sports injury when I was like 14 or something, um. I don't remember, I think I like twisted my ankle

00:17:50.130 - 00:18:03.600

and same thing, they were like, this is such a weird blood pressure reading, like you, a 16 year old girl at like three sport athlete wouldn't have this and everyone was just so inclined to be like, the machine

00:18:03.600 - 00:18:16.850

is wrong, this would never happen. Same thing with me not getting diagnosed with that surgery that could have prevented eight years of suffering, um, just being like, babies can't have that, little girls can't have

00:18:16.850 - 00:18:24.480

that. Um. Yeah, so that instinct really cost me a lot and probably will cost me my life eventually, but um.

00:18:25.330 - 00:18:36.640

Yeah, so then it, I used to get really bad um toe infections when I just for fun, um, because I used to get-- [This on top of everything else] Yeah, no, like I used to get pedicures with my

00:18:36.640 - 00:18:49.200

mom and my toenails have a tendency to get ingrowing and so they, yeah, that's, that's unrelated to all the other symptoms, but it did lead me to go to urgent care to get antibiotics for it.

00:18:49.950 - 00:19:03.000

And, um, while I'm there, they take my blood pressure and they're like, this is really not good. And then I, and again, they're like, yeah, I guess we need a new machinery and, you know, and no

00:19:03.000 - 00:19:16.110

one ever thought like to connect those dots. And to be fair, these were three wildly different incidents. This was like a, a sports medicine doctor, a neurologist and an urgent care like triage nurse.

00:19:16.720 - 00:19:25.890

And, so, I start to get really freaked out about this. I'm like, oh my God, like, and you know, just a quick Google search.

00:19:25.970 - 00:19:40.480

You know how you Google search things and they're like blood pressure and they're like severe organ damage, like [Yes!] people die-- heart attack, stroke, and I'm like, oh my God, and like I had never really felt anxiety about

00:19:40.920 - 00:19:57.270

anything before and then very suddenly I was like, I need to go to a doctor promptly and funnily enough, this was, so now this is 2021, and this is the day that I returned to school, like in-person school,

00:19:57.400 - 00:20:08.500

um, because I'm from Washington, so we were like the first state in the US to get COVID, so we took forever to get back to leaving our houses, um, so this was, this was April

00:20:09.480 - 00:20:17.800

of 2021, so almost three full years ago. And what grade were you in? I was a senior in high school and I was 17, my birthday is in July.

00:20:17.920 - 00:20:31.810

So I was 17, um, I'd been, I've been accepted into LMU at this point, um, accepted into the honors program. I think I'd been rejected by UFC at this point, so I think I, I knew I was going to

00:20:31.810 - 00:20:41.130

LMU and so I was ready to just like finish up high school, and then this happens. And so I go to my first class of the day and then my mom calls and she's like, hey,

00:20:41.210 - 00:20:52.350

I got you that pediatrician appointment, like, let's let's go. And so I meet her there um because I have my own car. And I just had this really bad migraine.

00:20:52.430 - 00:21:01.110

I'd had one for like the whole weekend, my grandparents were in town. Um, this was the first time I'd had a migraine for like 4 days straight and it was really not

00:21:01.110 - 00:21:10.370

good. I was-- And they were growing in intensity like, okay, I'm throwing up like I can't sit up, like I'm laying down in a dark room on the ground and.

00:21:11.420 - 00:21:22.990

Yeah, so I go in there and I'm like, I'm concerned about my blood pressure and they take it and they're like, oh, yeah, we're gonna make some calls. And I'm like, okay, interesting.

00:21:23.020 - 00:21:38.130

And, so, they, they take it manually because that's more accurate than a machine and um they're like, yeah, like, go pack an overnight bag. And my mom's like, okay, so at this point, I

00:21:38.130 - 00:21:51.780

have just the worst migraine ever because I'm getting more stressed out, as such, my blood pressure is raising and we didn't know yet that this was all the cause. And so, um, I get sent, we like drive to

00:21:51.780 - 00:22:04.870

downtown Seattle cause I'm from like a, a suburb, you know, and so we go to the wrong hospital at first [Oh!] and because there's like multiple called Swedish Blank Hill. There's Swedish First Hill and Swedish Cherry Hill.

00:22:05.540 - 00:22:13.410

I don't remember. I think I had to go first. I, it's irrelevant, but we went to the wrong hill and I'm like trying to follow my mom around this

00:22:13.410 - 00:22:23.690

hospital to figure out where to go to check in and I'm just like unable to stand. I'm just feel so bad and so we get to the hospital and to the correct one.

00:22:24.010 - 00:22:35.370

And they're like, oh, Piper, we've been told that you're like a an emergency like diagnostic patient. Like, we gotta get you to the pediatric floor ASAP. I'm like, okay, sounds good.

00:22:35.500 - 00:22:48.430

Um, sure, and all the while, like, again, things are coming back from COVID, so where um I had like a water polo budget meeting because I was the captain. I was trying to find a roommate, um, you know,

00:22:48.450 - 00:22:58.530

me personally, so you know how this turned out, but um, for, for the record, I did not have a good roommate, and a big part of it is because I was stressed about that at the same time as

00:22:58.530 - 00:23:12.170

going through exploratory diagnosis, and I re-- I literally found my future freshman year roommate while in the hospital because I just needed someone. My mom was like, you just need someone to live

00:23:12.170 - 00:23:25.690

with bro. So, this is what, that's how that happened, um, but [On top of everything else?] On top of everything else. [Migraines, toe problems] Yeah. [and then a bad roommate] Concussion that never healed, yeah, so my concussion never healed,

00:23:25.800 - 00:23:35.220

so there there was that and. Yeah, so I had like a sleep study scheduled while all this was happening for like the next week. And so, anyways, I um.

00:23:37.140 - 00:23:44.500

Yeah, they, I'm trying to remember. I have blocked so much of this out. It was like the worst day, like 24 hours of my life.

00:23:44.580 - 00:23:52.270

I can't even say day because it was like I was there for 24 straight hours just getting like absolutely abused. So.

00:23:52.640 - 00:24:08.310

They put in one-- [By abused, do you mean like--] like tested on, experimented on, [ugh!] like, like not not not like physically, [I don't know, not--] but like yeah, I just, that's that's just like kind of how I remember, recall it, um.

00:24:09.040 - 00:24:17.780

So they put like one, you know, I forget what it's called IV in my arm and then they put another one in and then they're doing blood pressure on literally all of my limbs.

00:24:17.820 - 00:24:26.860

So I'm sitting there like this, like I can't use my arms because I have two IVs in and then they're like, now we're gonna put another in your hand and I'm like [No, those are so painful] okay, so I think I had

00:24:26.860 - 00:24:33.810

two hand ones and two like mid-arm ones. They were juicing you. They were, not just juicing me but also to remove blood. [Oh!]

00:24:34.420 - 00:24:40.870

And so it was like, it was a lot of things. So they had a lot of um. What would they be called like drains in there [I don't know] so

00:24:40.870 - 00:24:49.390

that like plugs so that they could like either put in or take out. I'm the film major. Um. [Yeah] [[laughs]] Well, I don't know what was going on.

00:24:49.550 - 00:24:57.960

There was a lot going on. I had um, a CAT scan done, that was really painful. Um. Really? I, I've never, I didn't know that it was

00:24:57.960 - 00:25:05.360

painful. Yeah, at least for me, like where they were doing because they were doing it for my bladder and so they um.

00:25:06.760 - 00:25:16.610

They inject you with like a dye and they're like, oh, it'll just feel like you have to pee really bad. It was like burning all throughout like my lower abdomen

00:25:16.840 - 00:25:29.160

and I was so done at this point and sleep deprived that I was just screaming and my mom was in the hallway like hello and I was just like, I'm just gonna scream. [A reasonable [??]] like yeah at this point, like

00:25:29.160 - 00:26:25.440

fuck it and so um. [redacted] And so, it was funny on the board behind me, they had like this, you know, like a normal like, how are we doing today?

00:26:25.480 - 00:26:33.790

What are we trying to accomplish? [Yeah] And they were like, what are we trying to do? And it said pain management because I was just so feeling bad.

00:26:34.000 - 00:26:43.880

And so I had like I have a picture on my Snapchat memories of me with like ice on my forehead and like I was like in the hospital, like, you know, like you would put on Snapchat as a

00:26:43.880 - 00:26:49.320

senior in high school. [Yes.] Um I think I sent it to my friend, but still. Yeah, so.

00:26:50.090 - 00:27:00.910

Um, they thought that there was like a tumor blocking access to my kidneys or something and. Because of my history, that's why they sent me to a nephrologist just because they were like, I'm sure it's

00:27:00.910 - 00:27:10.590

something in that region. And so she did this long extensive interview with me and like literally everything I was up to medications, any of that.

00:27:11.280 - 00:27:21.070

And combined with all the tests, um, I also had to do since I was still pediatric, I had to, since I was 17, I had to do this crazy um.

00:27:21.940 - 00:27:32.800

Like heart ultrasound to make sure I didn't have heart damage from the blood pressure. And again, since I was 17, they had to do a more extensive version to look for like birth defects,

00:27:32.860 - 00:27:42.800

but they were like, if you're 17, you shouldn't have any of these, but like since you're not 18, we have to do it and that was also extremely painful because they were had this probe and like jamming it

00:27:42.800 - 00:27:48.050

like right here. [Oh!] Is this the sternum? I think so. [I have no idea] I don't know, but like, like jamming it in.

00:27:48.140 - 00:28:00.970

I also yelled a lot for that and so. And kind of something that's really haunted me for three full years now is that um well I, I was squirming around so much out of pain that they couldn't

00:28:00.970 - 00:28:14.130

picture like a major artery, and they were like, from your other tests, we can conclude that you don't have major heart damage, but like a big section could not be properly pictured, so like those results are inconclusive.

00:28:14.610 - 00:28:25.670

And that's really haunted me, like as you can imagine, and so-- [You're probably fine] I know, like that's the thing is like they they were like because of all the other tests, we can

00:28:25.670 - 00:28:39.470

tell that you don't have any heart damage. But now, because I was crazy once, not crazy, but because I was like, I'm sensing these things and I have to convince the adults in my life, may I

00:28:39.470 - 00:28:47.950

go see a doctor? And I was correct. Now for the rest of my life, I'm never gonna have a thought and be like, let's not explore that,

00:28:47.990 - 00:28:56.670

you're crazy. So, [Yeah] I've just had crippling health anxiety ever since then because I do anything and I'm like, oh, I'm gonna die.

00:28:56.830 - 00:29:08.920

I don't eat meat anymore because I'm like, uh, what if it's undercooked, then I get bacteria and die or my brain goes to the absolute worst scenarios. Like I'll be driving and I'm like, is this really

00:29:08.920 - 00:29:20.480

the song I would want the EMTs to think I listened to if I were to crash right now? [Oh my gosh] Just absolutely insane things, and I can recognize that, but I still feel this way, [Mhm] like I just.

00:29:21.220 - 00:29:34.520

I can't stop myself from feeling that way, so I, I have a lot of triggers and I like know about these things, um, and I'm like, I avoid them like, I'm drinking a Yoruba mate right now, and

00:29:34.520 - 00:29:41.720

I usually drink half of the, I was on a film set today. I got up at like 7 a.m. I'm gone. I have formal for my fraternity night.

00:29:41.800 - 00:29:49.280

I'm gonna be up until midnight. So that's the only reason I'm drinking a full one of these, but because I'm so concerned, I usually will just drink half in a day.

00:29:49.800 - 00:30:00.700

That's pretty good anyways for you. No, it's it's good health wise, but like-- [Yeah, that makes sense] but it's driven out of like primal fear, you know, [Yeah] so like I don't-- [That's-- [??]] I don't really party.

00:30:00.840 - 00:30:17.920

I don't smoke like I, I just drink socially, um, I'm 21, I lied earlier, um, like I just. I feel like I don't have the full college teenage experience that maybe you would imagine, just because this, I

00:30:17.920 - 00:30:28.400

really can't escape this fear in the back of my mind. So, anyways, all that to say I was diagnosed with chronic kidney disease, um, out of all these tests because

00:30:28.400 - 00:30:42.000

they saw that there was no fixable issue. Um, my kidneys-- [Oh so, nothing happened after all that?] No, no, [Because [??] diagnosis?] there was no, there was no fixable issue there, but there is an issue. [Right]

00:30:42.370 - 00:30:57.800

So my kidneys were damaged and scarred from the chronic UTIs from age 0 to 8, um, like, so then when I went through puberty and they became adult kidneys, mine didn't.

00:30:57.970 - 00:31:07.930

So, my kidneys are like super small. Um, I've been told that they're not like, they are smaller kidneys, but in like the, it's called a bell curve, right? [Yes.]

00:31:08.090 - 00:31:20.720

Where it's like the thing where it's like-- [Yes] um yeah. Um I'm in like this, I'm in this part. I'm in the smallest percentile of kidneys of adult kidneys for people my height that are female.

00:31:20.810 - 00:31:29.440

I think I have like this and I'm in the 3% of the smallest kidneys and so like admittedly they are smaller kidneys, but um. Yeah, so they're scarred.

00:31:29.520 - 00:31:43.130

So what happens is my kidneys request more blood from the brain because they're like, I'm damaged, I need to heal, but there's nothing they can do at this point. So they just constantly produce this hormone that says, I

00:31:43.130 - 00:31:54.030

think it was called like renin or something like that. Um, I don't know, it starts with an R, ends with an N, I think, but um they're like, hey, we need blood, and they never stopped doing that,

00:31:54.160 - 00:32:06.900

so that's why I had high blood pressure. It's because I constantly am producing more blood. And so, um. Anyways, now I take a medication daily called lisinopril, um,

00:32:06.910 - 00:32:18.780

that I think what it does is stop the production of that hormone over time. So it didn't immediately work and it's not a situation where it's like, I take it and that lowers my

00:32:18.780 - 00:32:30.250

blood pressure. It's like over a period of time and now I've been taking it for 3 years, um, my blood pressure is at a normal state, thankfully, so I'm mostly symptom

00:32:30.250 - 00:32:35.040

free. The past couple of weeks, I have not been symptom free and I'm not quite sure why cause my blood pressure has been great.

00:32:35.160 - 00:32:49.730

I take it daily, um, again out of fear and. Yeah, so that's that and that's how I got diagnosed, um. If it's okay if I, I keep going, uh, I

00:32:49.730 - 00:33:02.690

guess to answer more my relationship with disability, I, it was hard to immediately adjust to college, um, even though I had a couple months in between April and August when I moved to LA, um.

00:33:03.560 - 00:33:15.950

It was hard, and I didn't know what services were available, and that I was allowed to ask for services because I didn't really comprehend myself in relation to being a disabled adult yet.

00:33:16.080 - 00:33:23.340

Um. But I still felt like I don't know how I'm gonna be able to take care of myself in a couple months, um, and so.

00:33:24.740 - 00:33:37.240

Yeah, it was, it was a hard summer preparing and just adjusting [Yeah] to life with this new normal, let alone the new normal of college and everything, and then I had a roommate and I had severe roommate issues, um,

00:33:37.330 - 00:33:49.090

not to get into that too much, but that was just the main thing is that that was bringing up my symptoms, um, because [Oh] I wasn't sleeping, um, she would, she would like wake me up at 5 a.m. to

00:33:49.090 - 00:33:58.340

like rearrange her clothes and then like leave alarms on and sleep through them. It was just, it was, it was literally raising my blood pressure.

00:33:58.470 - 00:34:10.200

And so, when I got back, and so I was in that room for my whole first semester, and then when I came back second semester, like a weekend, we got a lawyer involved and LMU was like, okay, well,

00:34:10.310 - 00:34:19.620

I guess we'll honor your, yeah, it was a, it was a whole thing. Um, and again, that's how I had to realize like, this is something I need to ask for.

00:34:19.670 - 00:34:31.960

Like, this is at this point it was becoming a Uh, kind of, I call it a disability tax where it's like I had to pay to live. It's like, okay, I have to pay for melatonin and

00:34:31.960 - 00:34:43.240

these, I had bought really expensive Bose sleep buds which have since been discontinued, but they're awesome. They play like white noise and block out like sounds. And um I was like, I literally have to pay

00:34:43.240 - 00:34:51.720

to sleep at night, like this is messed up. And I'm, I was completely fine to pay extra money for a single because it's what I needed. But at the same time, it's kind of messed up

00:34:51.720 - 00:34:59.280

that I had to pay extra money for that and that I was being denied it and that was a room. It was a room that LMU had that [Yeah] they weren't

00:34:59.280 - 00:35:13.050

giving to me, um, and so I had to get all this documentation to get officially registered with disability support services and say like, I need this or my symptoms will come back and I was not given very long

00:35:13.050 - 00:35:21.570

with symptoms. Um, again, thankfully they're treated now, um, but I'm on this medication for life. Like there's no-- [Yeah] me not taking it.

00:35:21.720 - 00:35:28.860

Um, and that that also really scared me when I first got diagnosed, like I, I'm just all over the place. Sorry about that. [No worries]

00:35:29.950 - 00:35:44.430

Yeah, I, when. So after all the exploratory things, then I came back with both my parents for the official diagnosis and that's when they were like, yep, confirmed just kidney disease, that's it.

00:35:44.800 - 00:35:55.820

And I was like looking at the side effects of the medication they gave me a little pamphlet and they were just like, yeah, um, I was like, this is a lot, and she was like, yeah, it's not every

00:35:55.820 - 00:36:06.720

day you get diagnosed with a chronic illness. And I was like, I-- [Oh] and so I fainted, um, because I was like, that's just not how I was picturing it.

00:36:06.780 - 00:36:18.300

Like I hadn't comprehended that yet, and that in relation to myself. [Mhm] And so, um, that was scary to this day, I still faint when I go into doctor's offices, just, I

00:36:18.300 - 00:36:30.340

think it's just like a sense memory, like [Yeah] I-- I biked to campus. I got a fly in my eye last semester and I had to go to student health services to get

00:36:30.340 - 00:36:41.520

removed and they're like, yep, your eye looks like it's a little damaged, um, you lost a little bit of vision, but it's gonna heal fine and I fainted and they had to like help me up and everything and

00:36:41.520 - 00:36:47.640

I'm like, guys, I'm so sorry. And they were like, this was good news. Like, why did you do that? I'm like, I don't know.

00:36:47.760 - 00:36:58.320

That's just what my body does now. So now-- [Yeah] now like whenever I go to any doctor's appointment, like if I need like, like an antibiotic, I'm like, just to let you know, I'm gonna pass out,

00:36:58.350 - 00:37:09.480

so just give me some apple juice, like let me sit here like. That's just gonna happen. So, anyways, I got official documentation about my, my disability,

00:37:09.970 - 00:37:23.600

which is good to just have um on hand in case anyone ever asks for it and is an asshole, which occasionally they are, like, you'd be shocked, um, and I was able to move into a a single room,

00:37:23.690 - 00:37:35.260

and that helped a lot, but right before I was able to, um, I had an extreme blood pressure strike, a spike, not strike. And um it, it was super high, the fire, a

00:37:35.260 - 00:37:45.100

fire truck came. I like the EMTs had to come check me out and it was just from, from like stress. So, I try and not be stressed about things.

00:37:45.270 - 00:37:59.110

Um, I like to meditate and use crystals and go on runs, um-- [So good] you know, and so it's just, yeah, um, but I'm not exactly in the line of work that allows for not having high blood pressure like as.

00:37:59.710 - 00:38:09.470

I was really into being a film producer, like a line producer that does budgets and just make sure everything's on schedule. Um, and I realized I had really bad symptoms because

00:38:09.470 - 00:38:21.490

of that. So, not, and also for creative reasons, but definitely largely because of my disability, um, I'm shifting more to becoming a casting director because that's a stable job.

00:38:22.090 - 00:38:33.780

And the thought of having health care when I'm older never leaves my mind because I know that it's going to be expensive as someone with a chronic preexisting illness, even though my medication is, it's, I think it's the most

00:38:33.780 - 00:38:46.430

commonly prescribed one in America, um, which is great, I guess that we all have high blood pressure. Um, I bond with the-- [Great for you to take the medication that's available] yeah, I know. [Not great for people with high blood pressure] Yeah. [[laughs]]

00:38:48.110 - 00:38:56.900

I bond with a lot of old people. They're like, no way, you take lisinopril? [Ah!] It doesn't feel great. And now that I'm, I was with a pediatric nephrologist

00:38:56.900 - 00:39:05.850

until I was supposed to be with her until I graduate college, but she, she retired, unfortunately, so now I'm with. A lovely nephrologist here in LA, but she's an adult

00:39:05.850 - 00:39:12.720

nephrologist. So I go into the waiting room. There is no one under 60 there other than me [Oh] and the nursing staff.

00:39:13.170 - 00:39:22.290

So it just, it feels bad to have an old people illness, but now I have an old person illness, and that's okay. So-- And you're more relatable to them and and you

00:39:22.290 - 00:39:34.110

can be friends. Yeah, exactly, um. Yeah, so it took a while for me to accept myself as a disabled person and in relation to,

00:39:34.610 - 00:39:45.150

I guess the label of disability, because. You never think that you're disabled enough. Like, even when I scheduled this meeting, I was like, are they gonna want to talk to me because you

00:39:45.150 - 00:39:57.550

literally like, am I disabled enough? Like, do I don't have ADHD and that's mainly what DSS is for, uh, not obviously not mainly, but like a lot of their services are like, okay, being a

00:39:57.550 - 00:40:07.480

note taker, being all this um. And thankfully they've always been there and had my back once I was able to get access to their services, um.

00:40:08.290 - 00:40:23.140

But yeah, I, whenever I interact with other disabled people, I'm always like, since I, my symptoms are currently managed, is this really something that affects me? But then, yeah, the past two weeks I had, I

00:40:23.140 - 00:40:32.540

had 3 migraines in 1 week, which is not good. Um, I don't know why that happened. Usually, now I get a migraine like once a year. Um, and I think it's just because I was stressed

00:40:32.540 - 00:40:43.930

with everything I have going on at the moment. I've had some really hard interviews recently. And I was like. I cannot imagine myself doing what I'm currently doing, getting

00:40:43.930 - 00:40:54.010

like graduating college if I still had those chronic migraines [Yeah] and all those symptoms. So, I'm happy to be where I am and that's why I'm just thankful for literally every day that I'm

00:40:54.010 - 00:41:03.290

alive. I'm like, yeah, I'm just here and I'm gonna pursue my passion of, of film. Like, literally, why am I still here and actively working

00:41:03.290 - 00:41:15.590

to be alive if I'm not, because life is a-- life for me literally is a choice every day of if I'm taking my medication or not. Um, if I'm eating properly, if I'm working out, um,

00:41:15.720 - 00:41:26.430

if I'm meditating, not being stressed. So, why am I doing all this work if I'm not doing exactly and only what I want to do? So- [Yeah] yeah, I do feel sort of that pressure

00:41:26.430 - 00:41:40.880

on me, like, if I don't make it in film. What am I gonna do? But um I think I'm making it, so [Yes] we'll see, we'll see. [Yes] Yeah. That's really good to hear that DSS has helped you out

00:41:40.880 - 00:41:55.050

and with the things you need. But it's unfortunate that other areas of LMU, it sounds like, haven't been to the same level of help. And, do you have any like comments or?

00:41:56.510 - 00:42:11.140

Experience, I mean, you've already shared some experience but with other aspects of LMU that aren't specifically DSS because it sounds like they're doing a good job specifically but [Yeah] LMU is so much more than that one part and

00:42:11.270 - 00:42:23.610

it sounds like a lot of other areas of LMU like, literally, academics and whatever else need to step up. I'm gonna take a sip of water and then--

00:42:23.610 - 00:42:36.940

You do that, okay, hydrate. [Yeah, literally or diedrate, um] Hydrate or diedrate. I really did used to be kind of bad about my water consumption, but then when I got on this medication, she was like, yeah, you have to drink 80

00:42:36.940 - 00:42:48.570

ounces of water per day or it will damage your kidneys more [Ugh] to take this medication. I was like, that is a catch 22. Um-- [Well] so I can-- [What a convincer though] Yeah.

00:42:49.160 - 00:42:58.990

What a good motivator. [I keep this thing on me] I only have to drink two a day, I think. I think it's a 40 ounce, so. Um [[inaudible]] [But that is, that is a wild--] Yeah.

00:43:00.010 - 00:43:12.690

Recommend. [And again, because it's an old person medication] [[crosstalk]] [A pickle?] Yes. Cause it's an old person medication, um, she was like, oh, it's because um. Like old people, sometimes they'll forget to drink their orange

00:43:12.690 - 00:43:24.490

juice and they'll die because of kidney failure [Oh] on this medication, but it's because they're like old in a nursing home and stuff. And I'm like, well, okay, um, I'm sure it's more

00:43:24.490 - 00:43:34.010

than that. I'm just again recalling a period of my life that I've high key blacked out, um. Yeah, so back to the question, other aspects of LMU,

00:43:34.060 - 00:43:44.590

um. Again, I'm, I am thankful for, for DSS. Um, they recently set up a peer mentor program, um, and I think, again, like I think that is mainly

00:43:44.590 - 00:43:55.950

for people with learning disabilities, but they were like, anyone who receives our services, we want upperclassmen to talk to incoming freshmen. So I decided to participate, which was a really great

00:43:55.950 - 00:44:08.590

experience, um, because I meet with my mentee once a month and we just talk about how to ask for, how to ask for what we need because even though-- [Yeah] Um, we haven't disclosed each other's disabilities.

00:44:08.730 - 00:44:20.530

Um, we, we just know that we both receive services and our LMU students. I'm a junior, he's a freshman, and it's, yeah, it's great to just be able to teach what I've learned

00:44:20.530 - 00:44:33.400

in self-advocacy, both with professors and with um the institution as a whole. So that's really great, but in terms of other aspects. Um, LMU housing was really tough to work with, and

00:44:33.400 - 00:44:45.690

they remained really tough to work with, um, even though now that, now I live off campus, um, and thankfully I have my own room so I can control all the settings cause sleep really is a fight still every

00:44:45.690 - 00:44:55.410

day for me. Um, the reason I mentioned the concussion is because I, my brain didn't heal properly. That's kind of what my neurologist concluded, is that because

00:44:56.180 - 00:45:07.070

Um, I was kind of being boiled from the inside out. That's the way I like to imagine it, um, so my brain wasn't able to, to heal.

00:45:07.070 - 00:45:17.430

Like in a witch's soup? [Yeah] I was like a frog in a soup. [Yeah] Yeah. Um. So there was that, um.

00:45:18.300 - 00:45:28.980

And I think I low key still have some brain damage from that maybe, not enough to be like. Not enough to have real issues other than ins-- insomnia a lot.

00:45:29.500 - 00:45:41.910

That sounds like a real issue. [[both laugh]] But um, yeah, I I I have to be at like 60 degrees, not 60 degrees, oh my God, like 69 degrees specifically, and I have to-- Not when I'm

00:45:41.910 - 00:45:50.110

in Washington, only when I'm here and because we live next to the airport. I have to have a fan on for white noise and I have to be wearing shorts, like I need

00:45:50.110 - 00:46:01.070

to be actively cold and the blanket is warming me up. So I have to create this [[crosstalk]] feeling of constant cold outside but warm under this blanket [Yes!] you know, which

00:46:01.070 - 00:46:14.310

is a feeling you have to create in Southern California. And so, you can imagine how doing this with a roommate is not great, especially one who um was not a good match for me and would [Not [??]] intentionally.

00:46:15.230 - 00:46:22.700

Um, turn up the heat in the middle of the night, wake me up. When I wake up, I can't go back to sleep. That's just, that's just how it is.

00:46:22.710 - 00:46:33.870

Like, I need to wait for the next sleep cycle. It's a whole thing. Um, yeah, so, housing was not very receptive to that again until we got a lawyer involved, and so, um.

00:46:35.800 - 00:46:47.430

Later, I stayed, so post freshman year, I stayed on campus, freshman to sophomore year, and they were like, yeah, no disability accommodations for this. I was like [Oh] oh,

00:46:48.080 - 00:46:55.230

sounds good. They totally could have. Um, they totally could have and they--- [And they totally should've] and they didn't.

00:46:55.290 - 00:47:06.250

And so I was like, okay, that's fine. And so, but then DSS always ask like, do you want to invoke your single room accommodation? And I'm, I either say yes or no, like each

00:47:06.250 - 00:47:16.210

semester. Um, I've been saying no obviously because I'm off campus, but um it was really helpful and sophomore year I did decide to, I literally call it like leap of

00:47:16.210 - 00:47:24.490

faith, like, cause I'm an Assassin's Creed fan and that's the thing from there. But like, I was like, I'm gonna take this leap of faith and have a roommate, and um I had

00:47:24.490 - 00:47:34.200

a direct roommate who was a very cool person and I was like [Yay!] look, I have these boundaries of no clocks in the room because if I see what time it is, then I can't sleep.

00:47:34.560 - 00:47:44.730

Um, I was like, I need to have my fan on, I need to have my, I sleep with a stuffed animal and I will for the rest of my life because that's like, again, one of the conditions I

00:47:44.730 - 00:47:54.730

need in order to go to sleep. I have like a, it's like a weighted bear on my head, snow leopard to be weighted things. [I love weighted things] Yeah? [I have a weighted dinosaur and a weighted blanket]

00:47:54.730 - 00:48:03.040

So you get it? I get it. Yeah. Um, yeah, so that's, that's housing, um, but DSS tries

00:48:03.040 - 00:48:13.060

their best. They always ask and then they're like, we're gonna try our hardest, and, um, I do feel that they do, and then, um, I studied abroad in Bologna, Italy last

00:48:13.060 - 00:48:24.450

summer, so in between my sophomore and junior year, and um they, it's funny. I think they got me approved for it. They never notified me like you've been approved for a

00:48:24.450 - 00:48:34.040

single room. So, I spent the first month this summer mentally preparing for having to have a random roommate in a foreign country, and I've never been outside North America before this.

00:48:34.490 - 00:48:41.740

And, so I get there and they're like, yeah, you have a roommate and I'm like, okay, that's fine. So I get to the room and I'm like, I don't know how I'm gonna make this work.

00:48:42.010 - 00:48:55.560

And then we all come down for our first meeting, um, and I'm talking to this girl and she's like, Yeah, they thought I was someone named Piper, um, and so they gave me my own room and um it's

00:48:55.560 - 00:49:05.230

awesome like I have a queen bed, everyone else was in twins, so it's like two twins in a room and then, yeah, and so I was like. I was like, I'm not gonna get mad.

00:49:05.270 - 00:49:13.980

I'm not gonna get mad. I was like, you know what, no! For the-- reading the transcription, my jaw is dropped. Yeah, and I was just like, you know what, um,

00:49:14.310 - 00:49:28.310

cause I was like, it's unfair to take this away from me, and so many people were like, yeah, they accidentally gave me a single room and not me. And so, like, anyways, I, they hired a person to

00:49:28.310 - 00:49:40.000

hang out with our study abroad group. Who was a like a local to Bologna, and his whole job was to be a bilingual person who would talk to the hotel staff for us and like get

00:49:40.000 - 00:49:51.370

reservations at restaurants for us. So I was like, hey, Pietro, can you um tell them that they gave my room to the wrong person? And um he's like, yeah, sure, I'll see what I

00:49:51.370 - 00:49:59.080

can do. So they have this fight in Italian and I'm just standing there. um, I don't speak Italian, and so they're just like

00:49:59.080 - 00:50:11.200

yelling at each other and then he's like, okay, new room, and I'm like, okay, thank you. So, I thankfully got a single room. Um, and was able to live out my Bologna, Italy

00:50:11.200 - 00:50:21.240

dreams in a single room, but that [Yay] um, it took, it took a fight and it was interesting because they didn't take anyone's accidental single room away from them. It was just like [Huh?] a couple of people had single

00:50:21.240 - 00:50:33.810

rooms and some people had roommates, but anyway, so yeah, thank you DSS for all your help. Um, another aspect, I, of LMU I would say is like LMU dining, um, when I was a freshman in the

00:50:33.810 - 00:50:43.120

first year they came back from COVID, and I think they were pretty famously not great that year. I believe they've improved. I haven't had a meal plan since then though, um,

00:50:43.130 - 00:50:54.730

because their vegetarian options suck, and I would always complain about like, why do all my friends get their chicken sandwiches in 2 minutes and I had to wait 40 minutes one time for a grilled cheese at Iggy's and

00:50:54.730 - 00:51:08.970

I was like, please, like I just want some lentils and like chickpeas and like vegan protein like, please. And um I think I did complain enough that people years past me, um, are able to benefit like I

00:51:08.970 - 00:51:18.710

sometimes I go into the Lair just to like walk through it and I see that they have such good options now, and I don't know how they actually are because um I would never, you will never catch me

00:51:18.710 - 00:51:30.270

having a meal plan like [No] again, but like um. Yeah, there was that and at one point they contacted me and they were like, we're, we're gonna get you a, do you want like a dietitian?

00:51:30.440 - 00:51:44.680

And I'm like [Oh] no, I want chickpeas, like [[both laugh]] I, I want protein that's not consuming meats, that's not hard to ask for. Um. [Yeah] Yeah, um, again, I think they're, I think they're

00:51:44.680 - 00:51:50.080

a little better. Thankfully, I don't have an actual allergy. I feel like that would be bad for me at LMU, um.

00:51:51.070 - 00:52:00.790

What else, I mean, other than academics is a big one. Um, since I was a little kid, and I never realized why until like recently, my mom had me on. And--

00:52:02.710 - 00:52:15.620

I don't know if it was an IEP per se, maybe, but specifically so that I was allowed to have water on my desk and use the bathroom when I asked, um, because I went to public school and teachers

00:52:15.620 - 00:52:32.040

like to be on control, um, like control trips and not let me do either of those things and yeah, just the way I got treated growing up because they, I didn't have an official diagnosis until I was 16,

00:52:32.150 - 00:52:44.490

but I had all these symptoms like they would, one time they put me in. They gave me like a, a seat to sit on. Like, again, they would just treat public school, they would

00:52:44.490 - 00:52:56.090

always treat me like I had a learning disability when I had a physical disability, although it's not like a an ability. Disability is just a chronic illness. You know, it's like-- [Yeah.] all these different spaces of like

00:52:56.090 - 00:53:07.880

the disabled community and that's, that's what's great about the community is that everyone, no one has the same thing, but everyone ha-- has shared common general experiences.

00:53:07.970 - 00:53:20.330

So. [Yeah.] It's so refreshing to talk to other people but-- alright. Yeah, so when, when you say like, oh am I disabled enough, like it's not a matter of your, if like how bad or good things are just like the shared

00:53:20.330 - 00:53:32.260

culture and experiences and what you go through [Exactly!] you're part of that community. [And it's so--] It's so refreshing to talk to anyone that has any chronic illness, any disability of some sort, just people

00:53:32.260 - 00:53:44.550

who experience life differently. It's extremely refreshing to like hear their experience and share my experience. Um, recently, there there's a peer that I have, um,

00:53:44.560 - 00:53:53.800

that has Tourette's and I'm trying, I'm trying. Did you know Seth Rogen has ticks? He does? Yeah, I read his book.

00:53:54.050 - 00:54:02.780

Okay, give it to Seth Rogen. Um. Yes, he's part of the community. Shout out. [[crosstalk]] Yeah, but, um, so I'm part of a professional fraternity

00:54:02.780 - 00:54:18.980

and we vote on people on whether they can get in, which is inherently a little eh, and I realized when this very sweet capable girl um got denied not once, not twice, but thrice from this three times, to

00:54:18.980 - 00:54:31.220

put it correctly, um, from this fraternity, um. Because people were like, oh, she doesn't wait her turn in conversations. She doesn't um know when to like not talk in

00:54:31.220 - 00:54:42.510

conversations. And I, I was like, the second time this happened, I was like, okay, I'm gonna just ask them to examine why they might think that, like I'm not just

00:54:42.510 - 00:54:53.870

gonna pull the she's very open about her Tourette's experience card, but like we've had a lot of conversations about that and disability representation, so I was like-- The third time that this happened, I was like, I'm just gonna

00:54:53.870 - 00:55:07.310

be like, you're saying this because she has Tourette's and then people were like, just because she has a disability doesn't make her a good person and I'm like, sure, but let's talk about actual aspects of her and maybe

00:55:07.310 - 00:55:20.780

her personality as opposed to. A literal symptom. So, [Yeah] that irritated me and again like. It's weird to operate this space where I don't have a visible disability.

00:55:20.900 - 00:55:36.470

Like, I have to tell people and I'm very open about it, because it feels great to talk about this, um, but I, people don't perceive me based upon my disability, unless I disclose it to them, and I have

00:55:36.470 - 00:55:51.680

that choice, and she doesn't. And so I feel very strongly that I have to advocate for people who don't have a choice whether or not to disclose their disability because um, I just, I

00:55:51.680 - 00:56:06.790

feel for them as a fellow, again community member. Um, yeah, so-- [This might be an obvious question, but--] do you feel like it would be a lot more helpful if professors in classes like considered people with disabilities

00:56:06.790 - 00:56:12.130

like in their teachings like, oh, there's this study and then. Just sometimes I think about like things that relate to me.

00:56:12.140 - 00:56:21.650

I'm like, oh well, what about people that are like me in this way. So, I'm wondering that like if that would help like the people on your voting panel like be more aware

00:56:21.860 - 00:56:30.940

of how to be accepting of people with disabilities. Does that make sense? Yeah, I made, I made this whole presentation before this round this semester and they were a lot more equitable

00:56:30.940 - 00:56:41.340

this semester um because it was things not even disability related. It was just like, um, this one kid said that he, Spanish was his first language because um he had

00:56:41.340 - 00:56:53.450

a nanny who raised him who spoke Spanish. So that was his first exposure to language and people were like, oh, he's implying that like people who speak Spanish are nannies, and I was like that he's literally

00:56:53.450 - 00:57:03.420

just saying his lived experience and that's it. [Yeah] Like that is the most neutral statement you can have. So. Um, I've had, I've got a lot of issues with

00:57:03.420 - 00:57:13.610

that, so I made a presentation. I'm actually in the community leadership class right now and I'm doing my like semester-long restorative justice project on voting for this organization.

00:57:13.790 - 00:57:24.570

So I do hope to bring something like that. Yeah, I guess a better way to ask it because you're a film major-- [Yeah] is like, do you wish like um there was just generally more content where it's like,

00:57:24.580 - 00:57:34.720

hey, because because you want to be a casting person like-- [Yeah.] hey we're casting like. We should make sure that if it's a person with a disability, then we're casting a person with a disability [Yeah]

00:57:35.090 - 00:57:42.750

something like that. [Absolutely] Do your professors ever talk about that kind of thing? Um, I mean, my professors don't really talk about casting, period.

00:57:42.810 - 00:57:52.620

This is kind of just this other interest I've developed, but I guess my personal thoughts on that is that, and I, I still do need to talk about, I guess the academic sense of how LMU has treated me,

00:57:52.650 - 00:58:03.770

but um. Yeah, in that sense, I guess it's kind of like colorblind casting like I don't really believe in that, especially if it's something where like West,

00:58:03.850 - 00:58:11.970

like you're doing a production of West Side Story, like you should not be colorblind casting West Side Story, you know. [Mhm] um, and I think it kind of applies to disabilities too.

00:58:12.010 - 00:58:20.830

Like if it's something where it's important to the character and the essence of the character, you do need to cast someone who has experience with, I guess just any sort of disability.

00:58:20.980 - 00:58:30.850

Same thing I would personally argue with like queer and trans characters, like, because I mean we're both queer um like. I do think that queer actors should be given the

00:58:30.850 - 00:58:40.720

chance to play queer roles, things like that. [Yeah] But also thinking about the implications of like-- put, where to put people. Um, I recently did get the chance to cast a

00:58:40.720 - 00:58:49.610

project that was about the chronic illness experience and that was very refreshing. I couldn't read the script without crying. Um, it just shot last weekend.

00:58:49.760 - 00:58:57.960

Um, it was my friend's senior thesis, and she doesn't have a diagnosis yet. And so, um, I'm, I'm rooting for her to get that.

00:58:58.000 - 00:59:06.340

That's, and that's how I always interact with people who are like, I have all these symptoms and I'm going through the exploratory process. I'm like, I just hope you get answers soon.

00:59:06.520 - 00:59:16.280

Like I-- [Yeah] It's not like I can wish like I hope you get treatment because that's not a realistic thing or like. Um, I, yeah, I just hope that people find answers

00:59:16.320 - 00:59:25.450

and can get peace, but yeah, this project was great and very healing. Um, it was about this girl who sees a big purple monster, that's a personification of her chronic illness.

00:59:25.530 - 00:59:31.930

So she gets, she gets diagnosed and she's like an athlete. So, again, this is very me. I don't know how she wrote the script, that was

00:59:31.930 - 00:59:41.490

just me. Um. She literally wrote-- took it from your brain. Literally, and so um. Once she gets diagnosed, a like kind of stitch, like

00:59:41.490 - 00:59:57.190

stitch the Disney character [Yes] like monster appears in her like room and starts terrorizing her, quote unquote, but it's really like um like he's-- She's a runner and he's pulling her down because she's like falling and so it's things

00:59:57.190 - 01:00:04.370

like that. And throughout the course of it, she learns how to just. Live with it, not like, oh great, I'm so glad

01:00:04.370 - 01:00:13.290

I have this monster I have to deal with, but just being like. Yeah, this is, this is how life is now and we're gonna have to coexist and she literally is able

01:00:13.290 - 01:00:20.500

to have a conversation with this monster. Um, it's sweet. I'll send it to you when it comes out. [I love media] You will cry.

01:00:20.750 - 01:00:31.210

Yeah. [Yeah.] So I love, I love storytelling. People always ask me like how, what kind of stories do you want to tell and I'm like, well, it really is more about the people, but these are the

01:00:31.210 - 01:00:40.180

stories I want to tell. Like-- [Yeah.] that's why I was so excited about the project is because like um, yeah, I would love to talk about being disabled at LMU.

01:00:41.030 - 01:00:47.780

Um, yeah. [And we love that too] And we love that. We, by we I mean me and the voices. [Yes] I'm just kidding.

01:00:47.970 - 01:01:02.270

Me and um this project group. [Yes. Yes!] Uh, I guess we're down to our last question. [Okay] What is one thing slash final takeaway that you would like to share with us?

01:01:02.840 - 01:01:09.190

And by us I mean me and the voices. You and the voices. Um, we made that same joke twice and it hit every time.

01:01:09.460 - 01:01:18.690

Thank you. I'm not saying that insensitively. When I was little, I took this medication and I got the side effects which included hearing voices.

01:01:18.800 - 01:01:31.800

It was horrible. [Wow] But I don't currently hear voices [Okay] except for all the thoughts in my head. Okay, yeah, and we love thoughts. And yeah, we love thoughts [And by we--] sometimes and by we I mean us and the voices. [Yeah] [[laughs]]

01:01:32.020 - 01:01:43.990

Okay, now, do you have a final takeaway for us? Yes, um, I do, I do still want to talk a little bit more about my experience with academics at LMU first. [Oh, yes] Yeah, because I've been mean to keep, that's

01:01:43.990 - 01:01:52.790

big. No, it's, it's my, I kept getting sidetracked. I'm so sorry, but um. Yeah, so I disclose a lot to professors because a

01:01:52.790 - 01:02:05.390

lot of them have policies and again like to be on power trips are like, oh, no bathroom breaks during my class because you're a distraction and I'm like, my kidneys will fail, dude, and so usually professors are fine

01:02:05.390 - 01:02:16.640

with it. However, I had this one professor last semester for a Jewish studies class, this is important, um, where she was just like, oh, in that case.

01:02:17.130 - 01:02:25.620

I need you to sit in that seat right by the door. And I was like, hello?! I just asked if I might be able to use

01:02:25.620 - 01:02:36.430

the restroom during the semester and she was like, it's gonna just disrail the whole class, um, if you don't sit right by the doors, you can't like distract them. Is it her attention span that's bad or everyone else's like--?

01:02:36.430 - 01:02:44.310

I guess hers, yeah. And so whenever people would go to the bathroom, she would like roll her eyes. So, I ended up like really really holding it in

01:02:44.310 - 01:02:53.670

that class. [Oh my God] But um. Yeah, that just irritated me because then she talked the rest of the semester about how like marginalized her community was and like segregation and

01:02:54.550 - 01:03:05.200

the ghettos and everything and I was like, hm, interesting, like what if we were accepting of people nowadays, but yeah. [[both laugh]] Uh, what, what if we were nice to each other? [Yeah]

01:03:05.390 - 01:03:18.350

Um. [What if what if] I guess, I guess that's kind of a takeaway, but yeah, that's, yeah, that's not really a tangent about LMU academics, but a lot of professors, I think do need to consider again, just the different backgrounds of the

01:03:18.350 - 01:03:28.040

students that they're dealing with and maybe I think a before class survey would be good. I had a professor this semester, Professor Andrew Dilts in the poli sci department.

01:03:28.760 - 01:03:40.600

Shout out. [Whoever that is] Yes, um, he sent a, he sent out a survey just asking about like, literally, things like attention spans like do you use a laptop, do you have access to a

01:03:40.600 - 01:03:54.310

printer, but he also asked like. About disabilities and because I love when professors are like DSS is great, get registered with them. Accept their resources, but also what can I do for

01:03:54.310 - 01:03:58.720

you? Like I think that's just such a great thing to ask. And they should all do it. And they should all do that.

01:03:58.770 - 01:04:10.380

And so that's, I guess that's sort of a takeaway is like let's. Just, yeah, just ask and be conscious of the different ways that people are moving through life. Like that's the way I like to put it because [Yeah]

01:04:10.380 - 01:04:26.520

it's not just about disabilities, like it's about really everything. People are, we're all moving through life and we're all doing it differently and if there's a way that someone-- If there's something someone really cares about, there's probably a

01:04:26.520 - 01:04:35.880

reason, um. Yeah, they're we're just all influenced by our experiences and I think it's important to recognize that and just--

01:04:37.110 - 01:04:46.570

A kind of accommodate everyone. Yeah, and I like something you said a lot earlier, what you said to your mentee, just to advocate for yourself. [Yeah]

01:04:47.550 - 01:04:58.630

It's so important. Like I had a teacher this semester and on the syllabus, it's like no eating during class. [That's why it's so stupid] And I, I have to eat like every like.

01:04:59.250 - 01:05:10.740

30 minutes [Yeah] just because of like my own medical personal reasons. [Right] And I didn't even talk to him about it. I'm like, you know what, he doesn't even deserve for me to like, like he-- I don't need to explain myself

01:05:10.740 - 01:05:14.250

to him. [Exactly] So I just I eat in class [Good] and I don't care. I'm glad.

01:05:14.620 - 01:05:23.260

Thank you. Yeah, no, and that's that's the thing it's like usually I, I don't like disclosing to my professors. I like disclosing it to my peers and like [Yeah] letting

01:05:23.260 - 01:05:32.250

them know like I'm currently pledging a business fraternity and I um. We do some things sometimes and I like to keep my water bottle with me at all times, and I

01:05:32.250 - 01:05:40.530

thought I was gonna get yelled at for having my water bottle at this event that we had this week and everyone was like, you're so brave and I was like, so here's why I keep my water bottle on

01:05:40.530 - 01:05:47.850

me at all times. And I do feel a lot more bonded with my pledge class because I told them about that, but now they really associate that with me.

01:05:47.890 - 01:05:57.840

They're like, oh, your kidney bottle, and I'm like it's just a water bottle. [Oh my goodness] Um, I think we should all carry water bottles actually. I think we all-- [I think we all--]

01:05:57.840 - 01:06:12.150

I was gonna say that. I think we all sing. [Yeah] Um. We just high fived, um, for the transcript. Anyways, wow, I lost my train of thought. But, oh yes, but when I disclose to a professor, it

01:06:12.150 - 01:06:18.860

hurts. [Yeah] It hurts that I had to do that and then it hurts when I'm not heard, like, especially with that professor last semester.

01:06:19.530 - 01:06:31.130

Like I did not have to say that and just come out about like that, and then, but I felt like I had to and then to be met with, Okay, now that I know that about you, you need

01:06:31.130 - 01:06:40.960

to take the the disruption chair. I'm like, okay, interesting. So-- [Yeah] that hurt me. I'm sorry about that.

01:06:41.010 - 01:06:50.110

That's okay. Not that we-- [We will prevail] We will. [And we will advocate for ourselves] Yes, we will. [As Lions with disabilities] Yes.

01:06:50.800 - 01:06:56.310

Um, I guess that's all. Do you have any advice? I mean, you gave good advice. Advocate for yourself.

01:06:56.400 - 01:07:10.190

Advocate for yourself, accept services, um, if you're coming to LMU and you think that you don't need DSS services, but you could potentially be eligible, register anyways and just chat with them and see what they can do for you.

01:07:10.830 - 01:07:18.230

Um. Be part of the community, never feel like you're not part of it. If you are part of it, um.

01:07:19.850 - 01:07:28.250

Make friends. [Yes!] Friends in general, um, all I'm grateful for my friends that support me. Um, I don't know where I'd be without them, especially

01:07:28.250 - 01:07:38.930

when I'm experiencing symptoms, but I'm even more grateful for my friends who have various symptoms of their own because I feel like we really understand each other. Yes, I actually wanted to mention something earlier.

01:07:39.050 - 01:07:50.250

Yes, please. Um, this might be unrelated but also not, um. I was like, I love to find like little niches about myself in media, so I'm like, I wonder if

01:07:50.250 - 01:08:06.140

Piper has seen niches like, like a chro-- a kidney problem in media, and I'm like that episode of Euphoria where Zendaya has to [Oh!] hold her pee in for like 24 hours. [But that's her fault] It wasn't her fault. She doesn't have to hold her pee in for 24 hours.

01:08:06.140 - 01:08:18.780

But she has depression, so which is, you know-- [Yeah] So was it her fault? [Yeah] Maybe a little bit, but-- No, like, again like it doesn't even have to be like kidney problems, just anything

01:08:18.780 - 01:08:25.050

with like that vaguely implies chronic illness. I will cry up. I was trying to remember some on the way over like because I figured this would come up.

01:08:25.300 - 01:08:33.020

There's um. This rom-com called Last Christmas based off of the song Last Christmas. Is it a Hallmark movie?

01:08:33.270 - 01:08:43.350

No, it's like a normal, it was like a [Oh] studio like a [[crosstalk]] A normal movie? Yeah, no [[crosstalk]] like not straight to TV like it was, yeah, I watched it on a plane, um, [Ooh] this last

01:08:43.350 - 01:08:53.400

Christmas, in fact,. But um, yeah. [Last Christmas--] [[interviewer singing]], it's this whole thing and her parents are like, oh like. We're worried about you, like how are you adjusting and everything and it's like implied that she has a chronic

01:08:53.400 - 01:09:04.380

illness. And then the reveal is that this guy that she's been like seeing is-- [In quotation marks?] Yes, in quotation marks, seeing, um is her heart donor

01:09:04.380 - 01:09:14.290

and she's like hallucinating him because she had a heart transplant, [[gasps]] because she had heart issues. And so he literally gave her his heart. Oh my God, I was thinking this earlier when you

01:09:14.290 - 01:09:25.140

said your doctor gave you his bladder, which obviously he didn't. [Yeah.] Like I was thinking of, you know, the memes where it was like, like Harry Styles, [Yeah, yeah] like like you-- like you are, you-- [Babe, who is--] you needed like an eye transplanting.

01:09:25.210 - 01:09:34.580

It's like [[inaudible]] his hair do you think I gave you? [Argh] [[interviewee screams]] And he's bald. [He's balding!] I can't. [Yeah, sorry about the levels on that last--]

01:09:34.580 - 01:09:43.320

Last Christmas. [Yeah] I gave you my, oh, I just got it last Christmas I, literally [Because he gave her heart] gave you my heart. Yeah, there's, oh my God, there was another one that

01:09:43.320 - 01:09:52.840

was like high key a better example that I forgot. Oh. Panic Room by David Fincher. I just had to watch this for class, for a

01:09:52.840 - 01:10:06.560

class I project for, shout out Gloria Shin. Um, the [[inaudible]] group, um, anyways, um. Yeah, Joy, it's Jodie Foster, Kristen Stewart, Jodie Foster is the mother.

01:10:06.640 - 01:10:16.920

Kristen Stewart's like 12. It's like one of her first big roles. I think it is her first big role, and she has this unlabeled chronic illness, and she has to have

01:10:16.920 - 01:10:30.550

like a shot or I think it's kind of implied to be diabetes, um, but yeah, no, it was still, I care a lot to see it, um, just that people exist and live like that and it was presented

01:10:30.550 - 01:10:40.390

as like a plot device in this thriller like, oh my God, she's locked in the panic room and with these scary men and are they gonna give her a shot or is she gonna go into like shock and

01:10:40.390 - 01:10:52.310

they give her the shot and-- [Oh nice] I know, but they're not. [They are not ableists, but they are--] I know, but like anytime I see something where it's like, yeah, someone is a little sick. Oh my God, I thought of good example also

01:10:52.630 - 01:11:10.500

diabetes, but you know, Turning Red, [Yes] the the movie? Um, their background characters-- [Yes, a little girl had a--] Yeah. [What's it called?] Like a diabetes like-- [[inaudible crosstalk]] it's like the insulin, the thing that-- [Yeah, it checks the insulin] insulin monitors, yeah. Something like that.

01:11:10.500 - 01:11:21.770

Or I don't know what it is, but she had the thing in the arm and I was like-- this is fancy one thing in the arm. Really nice to see. [Yeah] Like yeah just. Yeah, and I maybe it's also just a natural response.

01:11:21.850 - 01:11:32.270

I just have a natural response to cry a little bit when I see like people living with chronic illnesses. [It is fun to cry] It is fun to cry, yeah. Our takeaways are advocate for yourself and it's fun to cry.

01:11:32.270 - 01:11:36.600

Cry a lot. Okay, I think we're finished, Thomas. We are done.