Living with Schizencephaly: One Woman’s Journey to Embracing Disability
Becca: [00:00:00] for me to one second. Be a perfectly healthy 17 year old girl and then I go to sleep and I wake up and I am , disabled. I’m sick and no one knows how to fix it or treat it.
Carling: Welcome to the, I did not Sign Up for this podcast, a weekly show dedicated to highlighting the incredible stories of everyday people. No topic is off limits. Join me as we explore the lives and experiences of guests through thought-provoking, unscripted conversations. I’m your host Carling, a Canadian queer identifying 30 something year old, providing a platform for the stories that need to be heard
Becca: hi. It’s so nice to meet you.
Carling: . I’m so excited to meet you. I have to laugh because I’m calling you fump truck, but it sounds like I’m insulting you, but I guess I’m like, we’re both equally insulting a
Becca: Some people like to be insulted. a thing for them. So I don’t
Carling: Yeah. Fair.
Becca: don’t kink shame here. I do have a name, but I don’t use it because I don’t know if you’ve seen my content, but in addition to just like being a ridiculous person, I take people down [00:01:00] sometimes who are of the say variety.
And we decided, like my partner and I, that it would be safer if I just, so I started using fake names. So I’d gone by like Tiffany, Britney. Carlos just like a bunch of random names.
Carling: I’m just gonna call you by different names
Becca: Please do actually dad Shepherd does a podcast and he will sometimes ask people if they wanna remain anonymous. And so they’ll say, you give me a name, whatever you think shoots me. So you can name me whatever you want. I’m down with it.
Carling: Ooh, I like ridiculous names that are spelled one way, but pronounced a different way.
Becca: I like this, like McKayley, like all of those. The leave
Carling: yeah. There’s too many letters to make it. I volunteered at my niece’s kindergarten and I was like, oh, this little girl, Deborah. And she was like it’s actually Debora. And I was like, oh, okay. I guess that’s what your name
Becca: actually there are two. If so, Devora or Devora is a Hebrew name.
Becca: I am [00:02:00] Jewish. I don’t know if you were I dunno if we caught off on everything.
Carling: I did see on your profile. No, that’s great. I didn’t know.
Becca: like d e b r a is Debra, but like the origin of it is Devora, which is from the Torah. It’s just funny because it’s like classic white people stuff. Like they found like a Middle Eastern Hebrew name and they were like, how can we make it white, make it Europe
Carling: Yeah. How do we colonize this name so that it’s, yeah. That’s incredible.
Becca: I’m getting over a little bit of a cold so I might have to go off screen and like off.
Carling: that’s fine. This is the beauty of editing. best to cut it all
Becca: appreciate it. I was stuck in bed for two weeks.
Becca: awful and it wasn’t covid and I tested every single day, twice a day because I was like, I’m very careful. I’m very cautious. I tried a mask in public as much as I can and like I got home from a doctor’s appointment actually and felt sick and I was like, oh
Carling: Oh no.
Becca: covid, so
Becca: who knows what it was. [00:03:00] Just regular flu season shenanigans probably.
It’s hanging around
Carling: Well, it is so good to meet you. I found you on TikTok. Like I found a lot of people, and then I started watching a bunch of your videos and I was like, I just need to
Becca: I love that. That makes me happy.
Carling: Yeah you’re funny, but you’re honest and vulnerable and like you, so far from what I’ve seen you say a lot of things that I’m thinking, so
Becca: fan. I. I feel like a lot of people will say, I have no filter. And then they’ll say something that’s like rude or CRAs.
Becca: filter. Like I have adhd so I don’t know what’s going on in my brain, but it’s coming out, it’s coming outta my mouth no matter what. So I’m glad that you appreciate it. Cuz I feel like some people just find it very annoying.
Carling: Ah, no. We don’t need these
Becca: No we don’t.
Carling: but I like, like your profile says your Jewish disabled and queer af and I was like, this is beautiful. I was like, this is like my person. I need to know who
Becca: Excellent. Are you also Jewish [00:04:00] disabled and queer af?
Carling: No, I’m not Jewish, but. I was like, I just relate to this person.
Maybe in a past life
Becca: I think so. I, it’s funny because like I am, I’m a reformed Jew, which is the kind of Jew that you think of when you think of oh my god, I almost said Woody Allen, but he’s
Carling: no, I think he’s
Becca: Yeah, he is canceled. I wanna say, is Jonah Hill even Jewish? Wow. I’m a ba, I’m Okay, let’s start over. I am a, I’m a reformed Jew.
I’m a reformed Jew, so I’m a casual Jew is what I call it. Meaning that yes, I went to synagogue growing up. I would still go probably if someone I know was singing or doing like a service. But I’m just not religious, if that makes sense. And I think Judaism is one of the few religions where you can be like a practicing Jew and be an atheist or be, someone who breaks all of the like, traditional Jewish laws, like the tattoos.
I dunno if you can see I’m,
Becca: Tattoos. When people think of Jews, I think they think of a certain type of person. And that’s why a lot of people don’t [00:05:00] clock me as Jewish right away because I have tattoos and I swear a lot. And I am not especially modest.
But that’s why I of started making content about Judaism because I was like, wow, people have no idea like if you’re not an Orthodox Jew. They’re like, what is this?
Carling: This is somehow, TikTok sends me the last couple weeks I’ve been on Orthodox Jew TikTok and tornado TikTok. I don’t like, I live in, not a real tornado we place, but TikTok has decided this is what I need to see. So I’ve learned a lot about the Orthodox
Carling: Jewish community. Yeah. I’m like, I don’t know, but I’m into
Becca: my, one of my best friends also got into Orthodox TikTok, and she’s from Alaska where like she didn’t know very many Jewish people at all. Maybe none. And she’s just become obsessed. Like she’s actually thinking about converting. She loves it and she’s calling me all the time with like random questions.
What does this mean in Hebrew? And I’m like, I haven’t spoken Hebrew since I was five. I have no idea what.
Carling: You need to get on, like Duo lingo and like brush up on
Becca: Yes. I’m actually learning Spanish on DU [00:06:00] lingo right now.
Carling: Oh, okay.
Becca: going like badly.
Carling: You should then sign up for Hebrew because I feel like you’ll you’ll get like a confidence boost cuz you’ll
Becca: Yeah, I think so, actually. So I did, I like opened the tab for Hebrew cuz they have like little tabs. And I was looking and I was like, I have like a visceral re memory of this. Like I,
Carling: Oh no.
Becca: so much about like when I was in preschool, I went to a Jewish preschool. And so for like arts and crafts, they would have you do a Hebrew letter of the day.
So they’d have like olive, which is the first letter of the Hebrew alphabet. It’s a, and you would draw it out in glue. I don’t know if you guys did this and then pour glitter on it.
Yeah. So then you have a glittery olive that you can put on your wall or something. And I was like, oh, it’s back. I remember.
Carling: you’re gonna go and go to Michael’s and get yourself some
Becca: actually. That sounds kinda fun.
Carling: That’s amazing. Okay, we both have adhd.
Becca: Yeah, sorry.
Carling: Gotta stay on track. No, it’s okay. It’s like how all episodes go. so the [00:07:00] video I first saw you were posting that you’ve got like a seizure disorder. Is it epilepsy?
Becca: Epilepsy is from what I have heard from doctors on umbrella term. So there’s a lot of like different seizure disorders that fall within that kind of scope of epilepsy. So I have get ready Schizencephaly, which is like good luck spelling it.
Carling: Now, how do you say that? In Hebrew?
Becca: I knew I would be a much better Jew than I am. So it’s actually it’s, obviously all of these things come from Greek or Latin and it translates in English to split brain. And a lot of people when they hear skits, they think schizophrenia, which again, it’s just like cephalic having to do with the brain skits, having to do with splits.
And I have holes in my brain, which,
Becca: I always think it’s gonna sound less crazy as I get older and time goes on, but it just doesn’t, it’s insane.
Carling: Yeah. So can you maybe tell me about how did you get this? How did you discover [00:08:00] it, and what
Becca: Sure. Schizencephaly is like a congenital condition and they don’t know a lot about it. It is so incredibly rare. I would have to pull up the numbers for you, but I think it’s like one in every 500,000 maybe. Maybe close to a million or something, people might have it. So it happens before birth, it happens in utero.
And what they suspect is going on is that people who have this condition, Schizencephaly suffer a stroke or something akin to a stroke, some sort of trauma in utero. And obviously this is while the brain is developing and so either your brain fails to develop all the way, or it does damage to the parts of the brain that has already developed.
We didn’t know that I had any kind of disability for years. I was developing right on time, hitting all of the milestones that one would expect, like a healthy, neurotypical baby to hit.
And everything was fine. Everything was, good and grand and whatever. And I started having difficulty with math in such [00:09:00] a severe way that they were like, how is this child who is pretty advanced in every other subject having such difficulty with math? And so they started doing all of this testing.
They tested for intellectual disabilities, they tested for physical disabilities. I remember that they used to pull me out of class for it, and it was really embarrassing. Yeah,
Becca: there was this really I can’t think of how to describe her except for jolly, like painfully cheer,
Carling: oh yeah. I have this picture in
Becca: Yeah, this woman who was like I don’t know what her profession was, but she was there to test me and make sure everything was okay and she poked her head in like sideways to the class and she went, come play with me. And I was like,
Carling: That’s what nightmares are made of,
Becca: yeah, they didn’t really find anything. They suspected a d d, they were right. And what they did actually find is that I don’t really wanna say smarter cuz that’s a shitty thing to say I was a gifted child,
Becca: know what I mean? It’s, I feel like
Carling: Yeah. there’s like tests that they give and you were
Becca: Yeah, it’s, and it’s really a silly [00:10:00] system because to measure intelligence is virtually impossible. And, but by the measurements that they use in the American school system, they had this incredibly cheerful woman who was responsible for testing for intellectual physical disabilities. They found out that I was testing above grade level and everything, and so they stopped looking. They were like nothing is wrong with her because she’s obviously highly intelligent.
There’s no evidence of an intellectual disability. There’s no evidence of autism or any of the things that they were looking for because they start with autism. They go to adhd, they go to any number of disabilities. And so it all came up negative, basically. And so they were like, okay, so not only is she fine, she’s great, and they sent me to the gifted program.
And I am not neurotypical. That’s the thing,
I have a brain disorder that affects the way that my mind works. Because like I, I mentioned before, I have parts of my brain missing in parts of my brain damaged, and that’s not something that you can necessarily tell by speaking with me or [00:11:00] looking at.
But it very much affects the way that I think, the way that I process information, the way that I interact with the world. And so I was put into these highly competitive, prestigious programs and I did very well, but I felt miserable. I felt different. Yeah. I just felt different. I could tell that.
Like I, there was something about me that wasn’t normal, is what we would’ve called it in the nineties. And I’m so glad, I’m so happy that we have terms now, like neurodivergence or neurotypical. it makes perfect sense because there is nothing I was gonna say, there’s nothing un-normal about me, but that’s not entirely true. It just makes so much more sense and it feels right. To say I’m neurodivergent instead of I’m not normal, or something is wrong with me. Yeah. So they had all of these tests done and I flunked out of the gifted program intentionally. And then when I was 13 or so. I went to high school and I started having this twitch in my hand. So I had this random these [00:12:00] convulsions in my left hand, and they would seemingly come out of nowhere. And it would start right, happen for about five minutes. Go away. So I just wanna give a quick trigger warning because I am gonna talk about eating stuff. And also a little bit of body harm. So I had a pretty severe depression in high school. I still do, but I’m on medication now. So I, got into high school. I was very insecure having some problems, and I developed an eating disorder and I developed a self-harm problem.
So when I started having these weird tremors in my hand, I thought I did something like I starved myself too much. Maybe I cut too far into a vein, something. And so I didn’t tell anyone. I didn’t tell anyone that I was having what ended up being focal seizures for years. And I, I hid it away and I felt shame about it, and I felt confusion and just even more, different than I did before.
And then one night when I was 17 years old, I had I feel like their parents are gonna [00:13:00] feel weird about this, but my mom used to let my boyfriend stay over and it seems very controversial.
I was almost 18, I was like two months before my 18th birthday. And I think her line of thinking was like, my daughter is safe.
She’s dating a boy that I trust. I know him, I know his family. If they’re going to engage in activities, like I would rather it just be somewhere safe. I had a boyfriend staying over and I was not asleep yet. He was asleep and I felt my usual tremor happening in my hand.
So my hand starts going like this, and I’m like, okay. Normal. Used to it. And then it went like this. It was into my wrist. And I was like, that’s weird. And it slowly spread up my arm into my shoulder and I blacked out. I had several grand mal seizures in a row which is incredibly dangerous.
Carling: And did that wake your
Becca: It did honestly, if he wasn’t there, I don’t know if I would’ve survived.
Which is something like it’s, is it like luck? Is it, it’s fortuitous. It’s just happenstance and I try not to think about it because I’m like, I could have [00:14:00] died. But yeah, he woke up. I actually, the last thing I remember was tapping him and saying my hand is doing the thing again, but it’s worth, and then the next thing I remember, it was three days later and I had been rushed to the emergency room.
And they didn’t wanna let us in because the American medical system is
Carling: Yeah it’s not
Becca: it’s not great. They didn’t wanna let us in. They, but there was like a wait list for a lot of people. And then I promptly had a seizure in the er, which is the best way to get admitted.
Becca: If you wanna get admitted to the ER right away, just have a grand mal seizure, they will let you in.
It’s so they let me in. I woke up a couple of days later. I had been apparently like awake and talking. In the meantime, I remembered none of it.
Becca: because it’s like I lost three days of my life And it had never happened before to our knowledge. And I was, I think I was in denial.
I think I was like, this is a fluke. This is just like a weird thing that happened so crazy. You’re, I was 17. You’re young, you think you’re invincible. You don’t think that you’re going to [00:15:00] wake up and be disabled. You don’t think that you’re gonna wake up and have gone through a trauma.
But that’s precisely what happened. I woke up three days after I had this grandma mal seizure. I had been in the hospital the whole time. They had been pumping me full of medication to keep me alive trying out different cocktails of medication to see if my seizures would stop. And in the meantime, they had run a number of scans and discovered that I’ve got parts of my brain missing.
I’ve got like multiple itty bitty little holes. The biggest one is about this long. And actually
Carling: Ooh. Like an
Becca: it’s, It’s least an inch it’s very weird. It’s in the parietal lobe, like right next to the occipital lobe. But like I got very lucky it didn’t hit that area of my brain.
Carling: And so did they diagnose you with something like, did they put a name to it right
Becca: they weren’t able to put a name to it for a few days I was diagnosed finally with schizencephaly, which means split brain, and it took them a while because they had to find a neurologist that knew what it was, which is like, it’s crazy, right? The fact that I went there,[00:16:00] so they had this I wanna say like Russian Doctor Polish maybe, I don’t know. They had this doctor who finally they found somebody who had heard of the disorder, who had seen similar brain scans with similar patients.
He had never treated somebody with this disorder before.
Carling: like what? What’s the protocol? Where do you go from here?
Becca: gosh, I wish I knew. I wish he knew.
Carling: Yeah, I wish somebody
Becca: it would be great. So really, all that they can do is throw medication at it, unfortunately. And that’s what they did. They threw all sorts of medication my way, hoping that one would stick. And it was about six months until I had my next grand mal seizure.
So that was actually pretty good. When you start having like seizures and you have a seizure condition, typically you won’t go as long until your next seizure because it’s just like a continuous thing. But the nature of my condition is so mysterious and confusing, so special.
Becca: I couldn’t just have a regular condition yeah they threw some medication at me.
I was going in for follow-ups every, like two to three weeks. And then [00:17:00] a few months later I had another seizure. And then I had another one when I was 20. So that’s actually a pretty good track record, having several when I was 17, going six months to a year, I can’t quite remember, and then having another one, but just one, and then another year and a half without any seizures whatsoever.
However, the entire time. After my initial diagnosis of schizencephaly, I continued to have these hand tremors and for whatever reason, it did not connect for me. It didn’t connect for the doctors either. They were sitting here and hearing about all of these symptoms and nobody thought to say, if you’re having weird shaking in your hands, perhaps it’s a seizure.
Carling: But they were probably thinking, I’m sure she’d say something if there was some weird tremor
Becca: you would think so. And yet here we are. Yeah, so I was having these weird episodes in my hand where my hand was going numb and it felt pins and needles, you know what I mean? And I’m like, not a problem. Totally normal stuff did not tell soul
Becca: as one does, and
What happened was [00:18:00] we did manage to get my big fancy seizures. That’s what I call grandma mal seizures under control. And I actually haven’t had one since I was like 20. Which is
Becca: 13 years now. Every time I think about it, I’m like, like it’s, I feel like I have cheated death.
But that’s the thing is that they saw that I was no longer having the big dramatic kind of seizures and they said, you’re good. Don’t even worry about it. And eventually, I think I was probably in my early twenties when I did mention to my doctor it’s interesting now that I think about it.
I was having a hand tremor most of my life and he said it sounds like it could be a focal seizure. So let’s do some tests. So what I did was I had about a million and a half EEGs an EEG monitors your brain waves. And so what they do is they take all of these little like electrodes and they are, they look.
Like nipple pasties, honestly, they look like pasties that you would put on your chest. they stick them all over your head and they have to use this disgusting. It’s almost like a [00:19:00] glue. It’s so gross.
Carling: do they shave like little
Becca: no, and that’s what I was so scared. I was in the hospital and I was like, okay, so maybe I’m dying, but like my hair are you gonna,
Becca: gonna shave my head?
And they didn’t shave my head. They just it’s harder to get in there. So there was somebody like gorillas will groom each other. There was someone in my hair, like grooming, looking for places to put them. And you sit there and you hang out for however long it takes for them to conduct the experiment, the the scans and they couldn’t find anything.
And every time I would go back and I would have an eeg, my doctor would call me after and say nothing. No abnormal brain waves, no seizure activity, nothing.
Carling: And are you thinking sweet?
Becca: Am I thinking? Great. Like at a certain point I was excited to hear that there was no abnormal brain activity at the same time I knew something was wrong.
And the, like that feeling when you know something is wrong and you’re fighting it, like you don’t wanna acknowledge it. It’s like you swallow a brick, feel nauseated all the time and [00:20:00] worried. And so for years I just went about my business. I went about my business.
I’m like, not even here’s the thing. I was so young when I met this doctor. I was 17. No one else knew what it was. There was a shortage of doctors who I could go to and just be like, Hey, here’s this really rare condition you’ve never heard of. Help me. And I had to put my trust in this man.
That’s why I get so angry when I talk about this because, I was just being gaslit and neglected the entire time because I very clearly was having some sort of something going on with my brain. My seizures were not completely gone and nobody thought to be like
Carling: yeah. Like we should look into this a little further.
Becca: this weird.
And so I had more brain scans. I was still having this tremor in my hand and at this point I started like googling it. And it sounds crazy probably to younger people that I didn’t look it up sooner, but remember I’m old as dirt these people,
Becca: Gen z. I’m a thousand.
So like we didn’t just Google shit back then. We didn’t Google [00:21:00] stuff. we just lived with it. And so eventually I did start looking it up and I was like, this seems actually so cerebral palsy and my condition schizencephaly are like tightly related. They present with really similar symptoms.
A lot of people who have my condition also have cerebral palsy. So that was one of the first things that came up because cerebral palsy, one of the symptoms is muscle spasticity and so like jerking movements of certain limbs. And so when I looked it up and I saw cp, I was like that’s like a big deal.
That’s a serious condition. Why hasn’t anybody told me about this? And then I came across seizures and I was like, so many people when they think of epilepsy or they think of seizures, they think of the grand mal seizures where you lose consciousness and you have full body spasms, tremors,
I was not aware that there were so many different types of seizures. There are absent seizures and focal seizures and grand mal seizures and just the list goes on. And there was no representation for that, which is like a [00:22:00] big reason why I do what I do. It’s a big reason why I won’t shut up about my disability because there’s probably someone out there going through the same thing who thinks that a seizure is just the kind where you fall down.
Becca: I just wanna make people aware that it looks like everything. It looks like so many things.
Carling: And so you had said that you were at the doctor’s and you ended up having a focal
Becca: yeah. So after years of talking to my original neurologist and saying, I think I’m having small seizures, and he would say to me, there was nothing on your scans. There’s nothing there. And at a certain point he actually did say, I think it’s in your head, and suggest that I I go to a therapist I can’t tell you like how invalidating and how humiliating that felt. It’s cuz it, it’s so difficult already to reach out for help to say, I think that I’m sick. I think that something is wrong with me and I need help. And so when you finally get the courage to go to a doctor and say, something is wrong with me.
I’m not okay. And they say you’re crazy.
Becca: emotionally, I’m still not recovered from that. And the thing is too, that like he told this because I [00:23:00] was younger, to my mother, he told this to my uncle who was like my what do you call like a guardian? Who after my parents passed away, my uncle was like in charge of me and everything.
And so they told him too, and he doesn’t know me very well, so he was like, yeah, sounds about right. Sure. Like she’s crazy. And yeah, I was embarrassed. I was humiliated, I was ashamed, I was sad. I was scared. it was only like two years ago that I finally said, you know what? I’m not doing this anymore.
When I have a focal seizure, my left side goes numb and it’s the whole left side of my body. So it’s literally my face, my arms, my legs, my torso, my foot, everything. when that happens I can’t walk, I can’t get up, I can’t pick something up with my left hand. I get the sensation that I have fallen off of a tall building.
So I’ve never been skydiving, but I imagine that fear that like really visceral, primal fear of I’m falling, I’m gonna die. That’s the feeling I get. And it’s so scary, right?
Carling: That’s awful.
Becca: Like [00:24:00] it’s horrible. And I was just dealing with it every day.
Carling: And how long does that last for? Like that whole experience?
Becca: it can, it depends. So depending on like how well I’m taking care of myself. So if I forget, seizures can be triggered if you already know that you have a seizure disorder by so many things. Number one for me is stress. And then there’s the amount that you’re sleeping how much you’re eating and how well you’re eating.
So if I’m eating a lot of like pizza and no vegetables, I will be more susceptible to a seizure and I do it anyway cause I love pizza. So there’s like stress and sleep and how you’re feeling and if you’re having a hard day. so if I’m like taking really good care of myself, my medication, I’m taking it on time, maybe five minutes, I’ll have a focal seizure.
It’ll go away. But if I’m having like a series of other things happening, 20 minutes, sometimes I will just be sitting there. left hand numb, left leg, numb, not able to get off the floor. And I have my phone on me all the time, so it’s really funny because I hear [00:25:00] people talking on TikTok about unplugging and like being present in the moment and I’m like, must be fun. Is that nice? That must be nice. yeah, I’m like, and I’m like I don’t wanna throw around the term ableist, but I’m like, this feels personal. feels ableist to me.
Carling: Yeah. I get that.
Becca: And then for the next 10, I am just drained. I am drained, I’m exhausted. My body has had this shot of adrenaline and I’m. I’m sleepy, man. Like I wanna take a nap. I’m grouchy,
Carling: yeah, because something has just happened in your brain.
Becca: my brain is like rebooting. It’s resetting itself. And physically the toll that, like having your whole body spasm it, it takes a lot out of you and it’s uncomfortable and it’s like sore.
And so I still won’t be able to get up for another 15 minutes. And I’m just like, man, this is like 45 minutes outta my day now, and I got sick of it. So I went and found a new neurologist. And she’s young. She’s a woman. She’s a woman of color. And that is important because I always tell [00:26:00] people this, if you are a, like a female identified person, if you are a queer person, if you are disabled and you want the best care you can get, go to a doctor who is also from a marginalized community.
Yeah, because I have been seeing old white male doctors my whole life, and not one of them listen to me
Carling: My doctor’s favorite thing is no matter what I go in for, he mentions the fact that I’m very overweight I’m like, I hear you. Thank you. But like also we’re here cuz my ear hurts. And I don’t know if that has he finds every
Carling: as if that might be, and I’m like, sir, this is not helpful.
Becca: I have a cut on my eyebrow. Okay. This is not about,
Carling: yeah, he’s like, well you are very
Becca: Have you considered that? Like maybe you’re diabetic and that gave you an eyebrow cut?
I was so ignorant of like Fatphobia and medical Fatphobia until I got fat a couple of years ago. And it’s funny because I say that to people and they’re like, no, you didn’t.
No, you didn’t. No. And I’m like, it’s okay. Yes, I did.
Carling: Yeah. Like body shapes [00:27:00] change. Body sizes
Becca: yeah, I was always a very thin person growing up. And then my, I, I started new medication, whatever stuff happens and I gained like probably 80, 90 pounds, which is fine. And that is when I was like, oh Lord, I have had this immense privilege my whole life. And I just had no idea. Because I also, as a chronically ill person, I would go to the doctor and be like, I think my medication has stopped working.
Or I had a weird seizure today. And the first thing they would say is you gained 90 pounds this year. Is that it? I’m like, no.
Carling: right? Yeah.
Becca: I’m actually like I’m glad, I’m not glad that I experienced it, but I’m glad that I gained the perspective that I did because of it. Because people are more likely to listen to a skinny person. They are. And I am, you know, I’m kind of a skinny person again. And so I feel like I need to be using my voice to address fat phobia, especially medical fat phobia, because of that intersection of me having been a fat person and now being still a disabled person.
And [00:28:00] that is actually something I used to talk about a lot. And then my seizures got worse that I had to just focus on that.
Carling: one thing at a
Becca: One thing at a time. So yeah, so I went to this new neurologist so I told her about what I was having the tremors and I thought it was a focal seizure. I’d done all this research. And she didn’t say, you’re nuts. She didn’t say, pick or it didn’t happen. She was like, okay, keep an eye on it and take videos.
And she was like, every time you feel it coming on, start recording yourself. You can send it to me through email or MyChart, which is like an American thing that we have. I don’t know if you have it. And I did, and I was sending her these videos like all the time. And I would go in probably every three months because she started a new med for me.
And so every time I went in, I had a new video and a new something evidence of me having these focal seizures and she was like, it does look like that and I don’t wanna deny you, but I can’t officially say that’s what it is yet because I need to see it.
And so we were planning on, it’s funny because when I was going into the appointment where this happened, it was to talk about having more [00:29:00] tests done so that we could find out what it was. And I didn’t even need to because I sat down in the lobby and I was like, oh no, I’m gonna have a seizure. I went into a room, like an exam room, the nurse who was taking my blood pressure was like, are you good? And I was like, no. I was like, I’m gonna have a seizure and the look of panic on her face. And I had to be like no, not one of those not one of those. I’m used to it. It happens every day.
And so she like made sure that I was sitting and okay. And then she just bolted to go grab the doctor. And the doctor came in and I was already fully having a focal seizure, so I couldn’t feel my limbs. And I get this kind of like far off stare because who knows? I don’t know.
Carling: Your brain is
Becca: Because my brain is doing some stuff, man.
And so she is like actually really excited. She’s like, it’s happening. It’s weird cause I do remember, but it felt like, so I was really far away at the time. So she is examining my hand because that is where I get most of the tremor. So she’s [00:30:00] looking at my hand, she’s like, okay, it’s a rhythmic motion.
Looks like seizure activity. She is checking my eyes. She’s like, can you look at me? And I’m like, no. I’m like looking here and there. And so she like, does this and she’s looking at my eye and she’s like, okay, not great. And she just like finally gets to do like a full exam during a seizure.
Becca: I wanna cry because I, when I posted that video of people were like, yes.
Like hundreds of other people with epilepsy were like, that’s the dream. the dream is that you have an episode at the doctor’s office so they can look at you and be like, I know what this is. And that’s what happened. And I just broke down in tears. I think I said to her, so I’m not crazy, and she was like, you’re not crazy. Like I’m, I don’t know who told you’re crazy. And I said, doctors,
Becca: some old white dude. It’s always,
Becca: he told me I was crazy. He said I was making it up. He said, it was in my head.
And she handed me tissues and like sat at me and was like, this is a seizure. You are not crazy. [00:31:00] You’re not a liar. You’re not any of these things. Like you have been right the whole time. And I was like, oh, like I wanted to like,
Becca: out into
man. What an incredible experience. And so the reason that I brought up, like I, it’s not untreatable epilepsy, but that sounds cooler.
It’s treatment resistant epilepsy. Is that like we thought it was under control because I was no longer having grand mal seizures. The doctor said, you’re good, man. You’re good. And when she officially diagnosed me with having they call them focal seizures or petite mal seizures isn’t a lot of names for them.
Becca: that? Cute,
Carling: like so
Becca: It’s just the petit.
Carling: pardon my pet. Yeah. My petite mall seizure.
Becca: It’s not a, it’s not a big mall. It’s just a little mall. It’s a small,
So when she officially diagnosed me with focal seizures, What that means is that despite the fact that I am on a lot of medication, it’s not fixing it. And [00:32:00] so officially that means that my epilepsy is not just like either, dormant or under control or no longer a problem.
It is treatment resistant. It is not being fixed. Not that there’s like a fixed, but like managed. It’s not being managed by the enormous amount of medication that I’m already on. it’s weird because like I knew that, I’ve been having this every day all the time.
But to hear it from a doctor I was like, oh,
Carling: And so do you just stop taking meds? What does this mean?
Becca: I dunno. What it means is I don’t She made like a game plan for me. I just love her so much. I could sing her praises all day. She sat down.
She, we had the longest appointment and she said, I want you to go to the epilepsy clinic. And I don’t, I’m not gonna say the hospital because I like to keep my information private, but there is a very good, very famous hospital here.
it’s a hard program to get into. It’s very busy, very full. And she was like, I need you in there. That’s what we need for you. And the plan now is that I go into this clinic first. I [00:33:00] have a consult, and then probably what happens is I check into the hospital and I just hang out and they take me off of all my meds and they screw around and find out they’re waiting for me to have a seizure.
They’re gonna see if it’s a grand mal or a focal or any of the various types of seizures. And, it’s really scary that they’re going to try and induce a seizure because they need to see where it’s coming from. I will have the fancy electrodes all over my head.
Becca: but it’s necessary.
And I am so scared,
Carling: yeah. Even though it’s like a good thing and it’s hopefully gonna get you answers. You gotta go through the scary bit
Becca: Yeah. To be fair, when I came home and I told my boyfriend, he was like, if you’re gonna have a seizure, the epilepsy clinic is the place to do it.
Carling: Yeah. That’s the place, that’s like the v i p of where you wanna
Becca: I’m not just a regular, I’m not a regular epileptic. I’m a cool epileptic.
So yeah, I’m, I feel like I’m doing a terrible job in talking too much. What do I do? How do I do this?
Carling: No, this is great. I don’t know. I I’ve been [00:34:00] doing this for three years and I don’t know,
Becca: I wanted to ask you like, how did you start doing this and what is the goal of your podcast?
Carling: Yeah, it really started so my friend of 20 years, her husband died by
Carling: not great. And I am a lesbian but accidentally married a man and I picked the
Becca: Been there
Carling: was like a psycho who Yeah. Had to go to jail.
It was a bad thing. And so we just joked that we like, laughed through our own trauma and then I was like, oh, we should start a podcast. And at first we were like, we should do true crime cuz like everybody does true crime. So I just came up with this idea and then in an unfortunate turn of events now I’m a solo podcaster. But yeah, so I think the goal with it is just to have these interesting conversations because literally like every time I post an episode, at least somebody is like, I didn’t know that somebody else experienced blah, blah, blah. Or I felt so alone.
I never thought I would talk about blah, blah, blah. And like TikTok is so great and I feel like I’m like bridging this gap [00:35:00] of taking these stories off a platform that, I mean they’re not all from TikTok, but taking people’s stories, and like I’ve interviewed people in South Africa, in China, all over Europe and Canada.
I’m just sharing people’s stories and it’s really great.
Becca: I love that so much.
Carling: I just think representation, like I joke that if when I was 14, the only lesbians I saw were like Jerry Springer, but if I had more representation, you know, like the toss and the podcasts and the YouTubes and all these things, maybe I wouldn’t have felt like I had to go down this literal straight path.
Becca: yeah. No, I agree. I’m also queer. Growing up, I didn’t have any, anything to watch. I discovered the L word when I was 19 too, way too late. I know the L word. and when I was diagnosed with schizencephaly, whatever you wanna, I felt such a sense of shame. I felt such a sense of I need to hide this.
Because, first of all, I don’t know why epilepsy in particular is a joke, [00:36:00] but it’s a joke. People make jokes about seizures all the time on TV and movies.
Becca: just think it’s a funny condition. And so I didn’t wanna get made fun of, I didn’t wanna be different. I was already different, I was queer.
I had, some learning disabilities. I’m adopted. My parents were divorced. . I just wanted to be like everyone else. And I didn’t wanna feel different. I didn’t wanna acknowledge that overnight, everything about my life had changed. And also everything about me had changed.
you are young, you think you’re invincible. You think you’re strong, you think you’re gonna never, nothing’s gonna go wrong for you. And so for me to one second. Be a perfectly healthy 17 year old girl thinking about going to college. And then I go to sleep and I wake up and I am like, disabled. I’m sick and no one knows how to fix it or treat it. That was such a huge blow. I don’t wanna say to my ego, but to my sense of identity,
Carling: a hundred percent.
Becca: yeah, it was so confusing. And so for many years [00:37:00] I either didn’t tell anyone that I was sick or I pretended that it was like just this little thing, a little tiny thing. It’s just epilepsy. It’s no big deal.
And realistically, because I am having these little seizures every day, it affects everything. I can’t go to concerts. I can’t drive. I’ll never be able to drive. I can’t get too stressed out. I’m not supposed to swim alone. I’m really not supposed to do anything alone, but I do.
and so much about me has changed for the better since I was able to really come out and just say I am a disabled person. I’m sick. I have a physical disability, and it’s okay. It’s hard and it’s weird and it’s strange to me in ways that I’m still coming to terms with, but acknowledging it, giving it a name and sharing my disability has given me so much power,
Carling: Yeah. I think that’s beautiful. I talk a lot about the straight agenda, but I also think it’s the able-bodied agenda that you are in order to be accepted and fit in and celebrated. It’s like you’re given this checklist go to school, get your [00:38:00] driver’s license, marry somebody of the opposite sex, have kids, get a job, and all these things.
But what happens when that’s disrupted how do you take up space and feel validated when you aren’t going to satisfy that
Becca: It’s hard. And there’s such an intersection, I think, between the queer and disabled communities that way where you grow up in a world that doesn’t understand you and doesn’t even like you,
Carling: Yeah, because you’re different.
Becca: Are we the same age? I think I’m 33.
Becca: Okay. So we’re, we’re about the same age. The world that we grew up in is not this world. you couldn’t go to school and be like, I’m trans, I’m disabled, I’m queer, I’m different. You would get the crap beaten out of you or, kicked outta your home, which is still a possibility for so many queer.
But it was so much more, I don’t know, how would you phrase it? It was accepted to just be homophobic or ableist or whatever. And now, disabled young people have this network, this inherent network that comes with apps like TikTok after school clubs that are like geared towards queer people and [00:39:00] all of these things that like, I’m so jealous that they have this because I just, I hid away, I kept it quiet.
so many things about me that are so important to who I am. And so intrinsic, like to my identity, I just lied about. I just lied about, I kept it, I kept them secret. so for me to be able to be like, I’m a sick person, man, I’m sick. Like I may not ever get better, but this is what’s going on.
And have people be like, love you. You know, That means the world.
Carling: Yeah. And I bet so many people see your videos or will hear this podcast that. Need that representation, that need to hear their story in you. And just feel that connection,
Becca: I hope so. I met, there’s another TikTok, or his name is Nick Mayhew. And he is a Paralympic athlete and he actually has my condition, but he also has cerebral palsy. And it’s hard to tell which is which, because like I said, they present similarly, but our symptoms are exactly the same.
And seeing him doing all of these amazing athletic things and being in the Paralympics, I was like, what? If I had [00:40:00] seen that when I was 18, sitting in a hospital bed thinking I was gonna die, I would’ve been like, I’m gonna be all right. And so I wanna give that to someone. I want someone to see that.
Like, No, I’m not at the Olympic. I’m in school, I’m gonna get my master’s. I have a partner I’m doing Okay. I think people need that.
Carling: I think almost maybe your visibility is more important because not everybody’s gonna become a paralympic disabled athlete and not everyone’s going to, run for political office or become a brain surgeon. But you live a really happy life and our loved and love and I like, I think that’s
Becca: So actually one of my best friends, two of my best friends are paraplegics. So they are so cute. Oh my God. I’m trying to get them to do TikTok. So they are a lesbian couple. They are now married. They are both wheelchair users. They got married like. Wow.
Almost a year ago. And before I met them, I hadn’t really interacted with people in chairs before in any significant way.
To be honest, I have a lot of the views that I [00:41:00] think most able-bodied people have, which is that being in a chair is a sad thing oh, I could never do that. I would just rather not be on the planet anymore. And like that, it just, it comes from ignorance and it comes from not having any representation and not knowing anyone that is in a chair because these women.
Are having way more fun than me. They’re having more fun than me. Like they are always at parties. They are always throwing these like extravagant, balls and stuff. And they are going to pride events. They are getting interviewed by magazines, and I’m like, I like to sit on the couch. But learning from them has been my favorite experience. Because like they have not been stopped even a little bit. And everything about them as individuals is incredible because they are just like highly intelligent, educated, compassionate women who are so funny also. And then them as a couple, like I just, they’re, they are a powerhouse together and a part I would never have known that, growing [00:42:00] up in the nineties when it was like, oh, the kid in the wheelchair goes to a different class.
And I was in one of those because I had a learning disability I would’ve never gotten to interact with somebody who was disabled. I would’ve never gotten to interact with somebody who, was missing a limb or had a limb difference or anything like that. they would have literally been sequestered away.
Carling: Yeah. Hide them away. Don’t let them be part of mainstream
Becca: Or if they are, they’re gonna be an inspiration. And that’s it. . And I am inspired by my friends who happen to be in wheelchairs, but not because they’re in wheelchairs, because of everything else about them. And man, I just love the crap out of them so much. And they taught me to be loud.
They taught me to be loudly disabled and proud of it, and proud of what I’ve survived. And I wouldn’t be able to talk about the things that I talk about without them. They’re just incredible people.
Carling: I just love your platform and love that you are so vocal and you are taking up space because this world needs that, like so
Becca: Thank you. Honestly, I it’s selfish cuz I needed it. I needed to [00:43:00] be proud of who I am and share that with people. So I’m really glad you found me. I’m really glad that like I got to ramble for an hour about my disability and all sorts of stuff, and I really appreciate the work that you do giving voices to people who might not otherwise have them.
Carling: Thank you. I just wanna make everybody’s stories as accessible as possible. So like people share their story on TikTok. Not everybody’s on TikTok. I’m like trying to bring it to another, medium. And I laugh at my own trauma.
if you don’t laugh at your trauma, are you even traumatized? Like
Carling: Oh no. Or I’m gonna be like crying in therapy and I don’t have time for
Becca: hard, same, hard. Same.
Carling: All right. Thank you so, so much. I hope we get to talk again. I would seriously have you back anytime to share any
Becca: that. I have a ton of crazy stories that don’t even have to do with disability, so I hope you will have me back. It’s been a blast and I appreciate you so much. .
Carling: I love it. My whole tagline is no topics off limits, so I cover everything. All right, we’ll
Becca: you so much. [00:44:00] Bye.
Carling: thank you so much for joining me on this episode. I hope you found our conversation informative and entertaining. If you enjoyed this episode, please don’t forget to follow me on social media. Share this podcast with your friends and leave a firstname.lastname@example.org slash I did not sign up for this.
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I hope you all have a fantastic week ahead and we’ll talk soon. [00:45:00] [00:46:00] [00:47:00] [00:48:00] [00:49:00] [00:50:00] [00:51:00] [00:52:00] [00:53:00]