Episode 2: More like Episode Toot...(Kidding, it's about Stigma)
Hello, and welcome back to BrainFart for episode two!
First and foremost, guys, I just have to thank you, the amount of support, love, and people just listening was far beyond what I ever thought it would be. I also just wanted to give a shout out to Martin for doing all of the intro music. He wrote, recorded, uploaded it, and got it all together, and I had some people ask me about it, so I just wanted to give him a shout out.
I also had some people ask me about if I would go more in-depth with the illnesses, and I definitely will, but I'm gonna save that for future episodes because I want to talk about something that came up this week. When I first posted it - nothing bad, that sounded very dire, it's not dire at all - it just came with people kind of telling me how nice it was to hear someone talk about invisible illnesses and chronic illnesses on a more social platform, and I realized just how much of a stigma there is. And so that's kind of the topic for this episode.
I just wanna talk about that, because I definitely thought about it prior to starting this podcast. Obviously a lot of thought went into this, it wasn't just one day I picked up a microphone and got going, but I definitely thought about how it would affect me - as a student, and my friends would think, and what my family would think, but also as someone who wants to enter the career force and wants to enter a profession that heavily relies on physicality and movement and being aware and memorization and a lot of things that involve your brain. And so just those thoughts of; what if a casting director or future employer heard the podcast? And what if they got nervous? What if they got nervous and decided that they might go with someone else equally as talented, but who didn't have a brain disorder and who wasn't a liability? And maybe you're thinking, “That won't happen. Nobody would do that. Nobody would put you in a box like that. We're in a new day and age. People are much more open.” But to be quite honest, it's already happened before to me. And this is a story I kind of wanna tell just to give you kind of some background on where I'm coming from with this idea, but also if it had happened to anyone else just say, “I'm here with you too.” And also just to kind of get it off my chest.
I was a part of a production two years ago... Yeah, I was a sophomore. I was in this production, and it was kind of this New Work Production. It was at my university, and my university is great because they'll bring in outside directors and composers and writers into the university setting, and they'll bring in their works. And we as students, will work on the show - we'll work with them, and they'll re-write things, so it's kind of a part of this workshop process to get this show on its feet. And so in the fall, during that semester, we would do a very short, smaller scale production of it in the city - in New York City - and then in the spring, we would fully put up the play in one of our theaters on campus. So it was really cool 'cause you were a part of it for both semesters. And I was luckily cast in one - I was a sophomore, and so for the first semester, we did the workshop, we went into the city, we did the thing, it was awesome - you feel like a real performer. And then in the spring, we started rehearsing again to get it up on its feet to show people, to have audiences.
And so during the rehearsal process, this was my sophomore year, and this was the time... This was the time my pseudo-tumor wanted to be known. And so it actually happened during this process. I will give the full story another time 'cause it's long and I kind of wanna bring in friends to retell it 'cause I don't remember a whole lot about it, and they do.
So basically, one night in rehearsal, something happened to me that had never happened before, and I was taking the hospital, and this kind of started my whole hospital journey. I missed three or four rehearsals because of it. And they knew - they were aware, It wasn't like I just dropped off the face of the planet. They were completely aware, they were not by my side, but they were with me and wanting me to get better (this is the creative team I'm talking about, and also the cast mates - I had wonderful cast mates and people who were working with me, and they became great friends afterwards), and so everyone knew what was kind of going on, they knew the basic gist. They knew I wouldn't be back for a couple of days, but they said it was fine, and to come back when I was ready. And I knew the show at this point, it wasn't like I was missing a lot. I was missing things, not to say that there were things not missed - but they didn't cease production because I wasn't there. I was missing some stuff, but I knew the show... I had done it in the fall, we did some rewrites, but I knew it in the spring, I knew what I was doing, I felt comfortable coming back to the rehearsal room, and I did. And I got the go-ahead from my doctors, they were like, “Okay, we don't really know what this illness is anyways, but you seem okay now, you seem like you handled the spinal tap and the treatment well, to relieve the pressure.” And so I also got the okay from the department heads of my university (so kind of the directors of the program and my teachers), they gave the outside directors and writers and creative team the “OK.” They said, “She's clear, she's ready to go, let her back in,” and they said, “Okay!” They brought me back in - I was in rehearsal for a couple of days, and then it happened. One day I had a memory issue and so I had to step out for a second. We went on a break and I walked up to them and I said, “You know what, I’m good. I got the ‘Good to go,’. I know what happened, I know that might freak you out, but I'm okay.” And they said, “Okay.” And then they asked me to step out, and that's when I think that's when they fired me. No, I know that’s when they fired me. But I think that the moment I forgot something during rehearsal was the moment that the fear of the unknown consumed them, and it spiraled and they could no longer have me in the production for the fear that I would mess up onstage. And I have to admit, I see where they're coming from. This was something they'd been working on for years, and they don't want some college student to screw it up, like they want to get their production to go further, and this was a step in doing so, and they didn't want it to end here - at my university - with me! And so they brought me outside and they sat me down and they said, “We are so sorry, but we think it would be better if you left the production, and if we let you go from the production.”
And I mean, that sucks - when you're like 19 and you're thinking about all the things you've done and have yet to do, and someone is so afraid of you and what could happen to you that they can't even have you part of the production. It really makes you think, “Can I continue doing this? These people don't believe in me, they don't think I could do it. So how someone else gonna believe that I can do it?” So I'm sitting there and I'm thinking about this and I'm crying, and they're crying because they're good people and they really were upset and sad to see this happen to me, and especially since it was not great timing for them - it wasn't great timing for me either, okay? And so we're both, we're just sitting there crying and I was like, “Okay, is this what my life is gonna be now? So many people just afraid of me or feeling bad for me, or afraid of what could happen to me, because they know about this now? And they have this knowledge about me that could be used against me,” - because it was used against me. They used it as a reason to let me go from the production... That's just a bummer. And it was a bummer, and I was really upset about it. And then the most interesting thing happened, we're just sitting there sobbing, and then the director looks at me and she goes, “You can be mad at us, you can just scream at us, you can get so angry at us, we deserve it.”
What do you even say to that? I have no desire to just start screaming at you and letting you have it. I don't wanna do that, I don't wanna waste what little energy I have left screaming at you in a public place for everyone to hear. So, god, I wanna keep my composure at least. I have my dignity, ma’am, please let me keep it. And so I did, I said, “I don't have any desire to scream at you, or to yell at you... I just wanna go home.”
And that's what I did. I had a friend come pick me up, I went home, and then I was in the comfort and the safety of my own room - and then I got angry. And I got angry when I was by myself and in front of people I trusted, and I was “Wah, wah, life’s no fair, this is a bummer, this stinks, boo hoo,” throwing pillows, angrily eating sweet potato chips, tissues flying around the room - and it’s silly to think about now, but it was a little ridiculous then. And then I kind of gave myself a 24-hour period. I was like, “You have 24 hours to be mad.” And I mean, you can be as mad as you want for however frigging long you wanna be, but I thought if I am mad now, I'm gonna be mad later, and I will continue to be mad and I will fall into this whole of self-pity and anger, and it will just eat me alive. And I just couldn't deal with that, 'cause I knew that wouldn't help with my health, and it would be too exhausting to have those strong feelings, and my brain already needed all the help it could get - it didn't need me to be mad and sad all of the time. And that's not to say that I'm not mad and I don't get sad. It happens a lot, and I wanna talk about that actually in later episodes as well (I know I keep saying I wanna put it off, but I kinda save some content for future episodes, so hold your horses), but I wanna talk about personality shifts, and anger and paranoia, so stay tuned.
But back to the reality of what was happening at the time - I gave myself 24 hours the next day was still a bummer, and it was raining out, it was like the weather knew... Mother Nature, was mad with me. So I had a bad day and then I just got better. Not like healthy better, (but I mean, I got healthy better too a little bit), but I also just kind of mentally was preparing myself and mentally healing myself. Which was, I think the best thing at the time for me. I just took the time - I took all this new freedom, all this new time that I had because I wasn't in rehearsals, and I just took time for myself and took time to try and keep focused on school and get through the rest of the school year and keep going. And I did, but I think back to the story, and I can't help but think of how much of a part stigma played, how much it was a major player in this occurrence and what happened, because they didn't know. And that is what fueled the fear, they were so afraid of the unknown, and of not knowing about this illness and not knowing about how I would handle the illness. And I have to say, this was right when it happened, so of course there was gonna be speculation. And so that kind of was my first encounter with people looking at me differently and seeing me differently because of this new-found illness that I had. And that's when I started to become worried because what would happen in the future for me? Would I be able to hold a job? Would people hold this against me if they knew? Would it be better if I just pretended that I didn't have it and didn't tell anyone, so they wouldn't know, so they couldn't hold it against me or use it against me, or even just let it influence their opinion on me?
And I worried about, “Oh, will I ever get a big part? Will people trust me after this whole issue? And the thing is, they did. People still trusted me. 'Cause I had a lot of teachers in my corner, a lot of teachers who were very angry about what had happened, that these people could fire me, especially in a school setting. They were like, “It's not that big of a deal. It's not that serious. It's a school production.” And so they were just very frustrated that that had happened to me, and really there was no revert. They even tried to get me back into the production, honestly, I had one teacher and me who kind of came to the consensus that it just wouldn't be a healthy environment to go back into, and so I didn't. And then I was cast again the next year! And so it continued to happen for me, I still got things, and I got a hold of the illness and I got a hold of how that affected me in my work space, and how that could affect me in my work space, and figuring out how to navigate that entire idea. but I still had this fear of what people would think of me, and it came to the point where actually, one of my roommates who is wonderful (Hi Juliana, I know you’re listening), she asked me one day, she was like, “Why don't you have disability papers through the school?”
And that was shocking. hearing that for the first time, because I didn't think I needed them. “This isn't that bad, does this even warrant disability papers, is that okay? How do I do that?” And it was super easy. I just sent in some doctors notes and was “Here, look, look any medically history, it’s sad,” And they were like, “It is sad. Here's the papers,” and we kind of worked out a system of what would be best, and we figured out that writing on -
(Oh. I have to get my disability papers for this semester, Thanks for reminding me. Um. What was I talking about? Oh, okay. Just kind of put my thoughts back together….)
So we worked out the system that “We'll just write on it that you're allowed to miss days, miss some class periods, no questions asked,” or if I needed to be late to class, or needed some breaks with homework like extensions, and that’s what was set on the disability papers, and then it said like, if teachers had questions to call the center and they’d tell them more. But basically all I had to do was go hand my professor these papers. But then it became a thing of, “Oh, people are gonna see me walk up and give these papers,” which whatever, I don't really care about that I don't… (I was gonna say, I don't really care about people [laugh] - I care about people, I guess they don't really care about if they know I have a special paper or something). But it still was eating away at me; “Do I really need this? Is this something I need?” And the answer is yes. Once I had them, I realized how much I needed them because I need days sometimes.
And this is where I'm gonna tell you about ‘episodes’ and what they are. I call them ‘episodes.’ I don't really know what else to call them. It's just something that happens. Honestly, it usually happens after a long day, it usually happens when I'm physically or emotionally tired, and it honestly feels like my brain is just like, “Okay, we're done for the day,” and it shuts down. And usually what that brings is a headache, a really bad headache, and then I lose vision sometimes. The vision gets blurry or I just can't physically open my eyes, the muscles of my eyelids just don't feel like they can work, and so I have to either close them or I can't really see. I forget a lot - I usually forget what the episodes are. I've been told by people, mainly Martin, my boyfriend, because he's there with me for them. And I forget what I'm saying, and then my words become mumbled, or I’ll sometimes get slurred speech - sometimes like I'm drunk - I get slurred speech, and usually when it's kind of bad, my body tenses really, really intensely, [chuckle] Okay, but it tenses up to the point where my muscles are so tight that I start shaking - it looks like seizures, but it is not a seizure. It just looks like one because my muscles are so tight. It's like when you're working out in your muscle shake because you're working them out a lot (I say as if I work out a lot). And I kind of crane my neck, it looks like I'm possessed almost shaking and my head thrown back, and I'm mumbling and my head hurts, and I sometimes hit my head to try and tell the person that it hurts, even though that's kind of counter-intuitive, counter-productive. And so that's kind of what an ‘episode’ is, and usually I fall asleep and I wake up the next morning and it's done, and that is great. It usually happens at night because that's kind of when I'm the most tired. It's happened occasionally during the day, which isn't great, 'cause then I'm gone the rest of the day. But it's usually at night when I'm done with everything and my body keeps myself going the entire day and I'm like, “Okay, I'm good, I'm good, I'm good. If I keep doing stuff, I won't crash,” and then all of a sudden I lay down, and it's like a switch. I could be talking, I could be watching a video, and then all of a sudden, it's like my head hurts, my brain hurts, I can't function. And that's like what I consider an ‘episode.’ And waking up the next day, it's just exhausting. I wake up and I feel like I ran a marathon (I say as I have a ran a marathon), so it feels like... It feels exhausting. I just feel hit, just hit with tiredness, and most of the time I just feel I need more sleep and I need water and just comfort just to kind of re-... What's the word? Like…. Hm, nuggets. “Re-cuperate!” Yeah, sure.
And so that's what happens. And these papers gave me the chance to miss class because of episodes. Because there were times where I would have class at 8:30 in the morning, and I would have five classes in a row going until 5:30 PM, and then I would have rehearsal at 6:30 PM, and then 6:30 to 10:30 was rehearsal. And then I would walk home and I'd get home at like 11. And then I would usually eat because I'm a hungry gal, and then you get your life together and you're doing all this stuff and then it's 1130, and then, oh, I forgot to shower (because I forget to shower, that's gross, but whatever). And then it's 12 and then you're in bed and then you're so tired that you completely shut down. And that is what would happen to me, and then the next morning I'd be like, “Okay, I have to do it all over again.” And then I couldn't because I had just expended… (Or expelled? Expended? I don't know), I did something with my energy and it was gone! And so these papers gave me the opportunity to say, “Okay, here's your break, here's her mid-week break,” because I couldn't make it to weekends, I couldn't. And then I'd be working on the weekends! I was working all the time. It's an intense major, nothing to turn your nose up at. Yeah, and so this is what these papers allowed me to do, but then I'm missing class, and then I'm doing group work with people, and they don't understand why I'm not there, and they're wondering, “Where's our partner, Why doesn't this girl for show up to class anymore?” And then it becomes easier to just tell them you have the flu, you’re just like, I just got hit with the flu. Because that's just something that's easier to understand. Because if I said, “Oh, I had an episode because of my neurological condition,” people are like, “Oh, okay. No idea what that means.” But it's easier to just be like, “Yeah, I had the flu.” And everyone immediately was like, “Oh, that sucks. Yeah. That's something we can relate to, that makes sense to me.” And so it became easier to tell people that than to explain my illness, so then people just thought I had a crappy immune system (I mean, I do. But that's besides the point).
And the same goes for people believing that I'm just lazy, because I had to essentially stop dancing because it was too physically demanding, and it would tire me out too much. Then there was some times I'm sitting on the couch or I'm laying in bed and I have to, I don't know, fill up my water bottle. And I'm sitting there and I realize, “Oh, I have to get up and I have to walk to the fridge, and I have to get the jug out, and I have to pour the water, and I have to put the jug back in the fridge, and I have to drink the water, and then I have to walk back,” and I can't tell you - sometimes it just seems so daunting, that I would rather be thirsty. And so when I'm asking people, “Oh, can you pass me on a water bottle, or can you go fill my water bottle?” And you say it in that little voice like “Ouu, can you do this for meee?” And then people just believe you're lazy, and I'm like, okay, it's easier for them to think that I'm just lazy than for me to explain to them, “No, it sounds ridiculous, but this is my Mount Everest right now.”
And I mean, who knows, 20 minutes later, I'm fine and I'm running to the bathroom 'cause I've to pee really bad. Or I am dancing a little bit because all of a sudden the energy comes back - but in that moment, it's gone, and there's no way of describing it, 'cause it sounds so dramatic; like “I possibly could not get up and go film water bottle, God forbid,” but truly it is like that. I'm sitting there, and it's just the impossible task of that moment. And that's what's kind of a bummer about it, because then the helplessness starts kicking in, and you're like, “If I can't even get up to go fill up this water bottle, how am I supposed to do with three-hour show?” But it's just that moment and sometimes adrenaline kicks in to do it and sometimes it doesn't, but it's really easier just making people believe a different side of you than trying to explain to them what's actually happening inside of you. And I'm not gonna lie, it sometimes feels like I am lazy or oh, I see all my classmates dancing, or I see all of my roommates going to the gym every day, I'm like, “Yeah, I'm gonna go to the gym today,” and then three clock hits and all they wanna do is take it out, or I have to do homework. os then I'm like, “Okay, I'll do it after, it'll be a nice pick me up, and then I'll eat dinner,” and I make this whole plan for the rest of the day… and then I'm in bed watching videos, because that’s what I need. I need a break. So then you're beating yourself up, you're like, “Oh, I'm so lazy, I need to get in shape. That'll make me feel better! I'm just out of shape right now, that's why I'm so tired, when I get in shape, the endorphins will release,” and they do, that's all science and that happens. And sometimes I go to the gym, I'm like, “Yeah, I'm healthy, I am the picture of health. Yes, yes, yes. Nobody knows that I'm sick, I'm on the elliptical. Uh huh, yeah, kill it.” Just like that, that's exactly what I do, and then I'm on the elliptical for five minutes and my head starts pounding and I'm like, “Oh, that's why I wasn't doing this, for a week, because I cannot with my brain. Then I leave. And then it feels like you're exaggerating, and then people think you're exaggerating. People are like “Okay, you could take one ballet class a day, that's not that much effort. You could be doing that.” I can't, and I can't get off the couch to go fill my water bottle, I need someone to help me, or else I'm gonna be thirsty, I'm gonna be a thirsty gal, and I need your help. And sometimes you just need to ask for help.
So that's it - and you know what, sometimes people get it, like Martin, love that boy. He’ll be like “Yeah, okay.” He just fills it up, no question, and then I feel like a queen. I'm like, “Haha, peasant!” But really, I'm just like, “[sob noise] Thank you, thank you for helping me.”
But yeah, I guess the whole point of this was - at least I feel this way, I don't know how you're gonna feel, but I'm hoping this might help - you’re gonna feel stigma, and you're gonna feel the judgment, and it's just like… You gotta leave that fear behind, and if it means that you actually have to educate your friends and just ‘come clean’ and be like, “This is how I feel,” instead of making them believe that you're just lazy. You don't have to make anyone believe you're lazy, you could just say to them, You can educate them and talk to them about what's going on, because then you're all on the same page, and then that's a nice thing. When your friends and family know that, then you don't have that fear, especially in your safe space, you don't have that fear of judgement. Because whatever, people who don't know you are gonna think what they're gonna think, and I feel that a lot, but unfortunately, it's something that I have to live with, it's something that people with chronic illnesses have to live with, and so it's just finding your way of coping with that, I think. And finding your piece with that. And not to say that people are still gonna bug you, some people are still gonna annoy you with the things that they say and the looks they give, but as long as you know, as long as the people you care about now then... I think you're golden.
Tell who you wanna tell... It's your life. I'm just telling everyone, so now I won't have to make people believe I'm lazy. I mean, not to say I'm not a lazy hoe. I don't do a lot, like there’s sometimes I feel perfectly healthy and I'm like, “Carry me to the bathroom!” But... But there are times, there are times that I really do need the help. So it's okay to ask for the help, I think.
Yeah, I think that's all I really had to say about the subject. Yeah, I think that'll be it.
Thanks for listening again, guys. Thanks for letting me get that off my chest. I know I wanna go into depth about more things and I wanna really give the dedicated time to each illness, I wanna get them their own little time in the spotlight, but I think this was one that made sense to me to come next. And so that's why I'm doing it, and I hope it wasn't too far out or too confusing. But yeah, that's kind of what that is.
So thank you for listening, again, and have a good whatever time it is.