Brianne talks hypermobility, mast cell disorders, and recontextualizing old experiences using new frameworks.
TranscriptI’m Brianne Benness and this is No End In Sight, a podcast about life with chronic illness.
Okay. Well, I’m really excited to finally be sharing a relatively recent interview. Today, No End In Sight’s brand new associate producer, Drew Maar is interviewing me about all of my health updates from this year. Plus lots of semi-related rambling and a bit about what to expect from upcoming podcast episodes. You’ll get to know more about Drew in episode 71, and you can expect to hear his voice more in future episodes as he takes on more production work.
In this episode we talk a lot about hypermobility, mast cell disorders, PTSD, and the ongoing work of recontextualization as you find new frameworks for interpreting old symptoms. We also talk a bit about my TEDx talk, my storytelling anthology, and the #NEISVoid hashtag on twitter so I’ll include links to all of those in the show notes.
We’re also refining how we do content notes for the show so you might see a few iterations of that before we settle on a style. If you have any feedback about what’s most helpful, we’d love to hear it!
Today for content notes, you can expect conversations about alcohol at about 22 minutes, in 26 to 32 minutes, and 49 minutes. I start talking about a bike accident around 28 minutes, then that gets a bit gruesome in terms of wound description around the 30-minute mark. And shortly after that there was a description of violence and secondary trauma that continues to the 35-minute mark. Then from about 35 to 40 minutes, there was significant discussion about parent loss. We also talked briefly about restricted diets at 53 minutes in, and then about COVID and lockdown at about the 60 minute mark.
Before we start, here’s my disclaimer: This podcast is not intended as a substitute for professional medical advice, diagnosis or treatment. Make sure you talk to your practitioner about any questions or symptoms.
[guitar riff]
Brianne: [00:02:02] Okay, great. Do you want to ask me about my health, and then whatever questions you have?
Drew: [00:02:09] So how was your health as a kid?
Brianne: [00:02:12] Great question, Drew. Thank you. I have thought about this a lot, and I think I talked about it a lot in episode one, but not in episode 50, but I was not a very healthy kid, but I didn’t really register that at the time. And I think there’s a lot of reasons why. So, first of all, I was exhausted all the time in elementary school. My mom used to dress me in bed, which is not normal. I don’t think for a prepubescent kid to not have that much energy. And I also was probably in a lot of pain. So when I was in third grade, my teacher called home to say, “Brianne keeps saying that she has a stomach ache or a headache, almost every day. What’s up with that? Is something going on?” And this is how the split happens. So both my parents were psychologists, which is not typical, probably for a lot of people. And they split up when I was pretty young when I was two or three years old. And then my stepmom was a social worker, and then my stepdad was in sales. So he’s on his own trajectory, but three of my four parents were mental health professionals, which is not normal.
Drew: [00:03:20] Yeah.
Brianne: [00:03:20] So when I was in third grade and I was having a really hard time, I was also miserable. I came home crying from school almost every day. It was just… a lot of things weren’t going well, and also I think I was pretty uncomfortable. And at that time is when they do standardized testing in Ontario, which is where I grew up in Canada.
Drew: [00:03:38] Right.
Brianne: [00:03:38] And according to Canadian achievement test results… that’s what it’s called the CAT test. They would use that as a screening tool for special education. Okay. Including gifted. And so I think it’s kind of a bell curve situation, even though obviously there’s a lot of bias that goes into testing and the construction of that bell curve. But they’re like, “Okay, kids who performed in a certain percentile on this standardized test get pulled out for more follow-up testing,” Including a lot of tests that I now know are used to test for other types of neurodivergence, like Raven’s Matrices and other stuff that eight year olds can do to test… I don’t know what they call it, but it’s probably like, “Innate intelligence,” which I put in air quotes because it’s a horribly flawed concept, but it’s checking for how your brain works, basically.
Drew: [00:04:23] Yeah.
Brianne: [00:04:24] So that was optional, but… gifted education… I know you know this, but gifted education is a type of special ed, but it’s not usually identified or talked about that way, probably to make it sound less stigmatized. And for a whole bunch of other reasons that maybe we talk about, maybe we don’t. But anyway, so I went into gifted in fourth grade and this impacted, I think, a lot of things. It was a full-time program. It was one of four in my city. So…
Drew: [00:04:51] Okay.
Brianne: [00:04:52] It was like a normal… I don’t know why I’m using the word normal so much, but it was like 30 kids in a classroom. It felt like any other education, but all of the kids in this classroom were kids who had been flagged by standardized testing as being… at the time they would call it, “deemed gifted.” So you had an asterisk next to your name, but the reality is that probably most of those kids were neurodivergent and getting put into this new environment that has been specifically designed for kids whose brains quote, “work a different way,” but like, “in a good way,” again, quote, I think creates an interesting environment and for me, and I know a lot of other people feel this way.. I was a lot happier in school from fourth grade on, but I didn’t think critically about that very much. So that is one thing that I think played into it. And then there’s a couple other layers that I’m going to put into it that I didn’t talk about, I realize, in my last couple of episodes. So layer one is that I said both my parents were psychologists. And the reason that my dad is a psychologist or was a psychologist, is that he grew up… he was dyslexic, and he had ADHD and neither of those were diagnosed until he was in at least his twenties. So he went through high school… I think he started college and then dropped out and then my grandfather who I never met, it was his greatest regret that he hadn’t gone to college. And so as he was literally dying, and my dad was a college dropout, he was like, “No, son, I’ll be so proud of you. I want you to be happy, get your education,” kind of. Maybe I’m misrepresenting that. But…
Drew: [00:06:30] Woof.
Brianne: [00:06:30] Yeah, right? And so that’s the picture that I got from my dad, I don’t know how true it is. And ultimately he did, and I think the diagnoses made a big difference. So basically my dad in the 70s and 80s, we’re talking about, so… this is really important, actually. My dad who had gone to boarding school for high school.
Drew: [00:06:48] Okay.
Brianne: [00:06:49] So he was… his grandfather had been pretty affluent, if that makes sense. So my dad came from a pretty affluent family. He was living with undiagnosed disability, but one of the realities of having a lot of privilege is that you also sometimes get a lot of invisible accommodations.
Drew: [00:07:06] Right.
Brianne: [00:07:06] And so I know, going all the way back, that that was happening with my dad. He failed high school French, and they were just like, “Please, we will give you a passing grade if you just, don’t take another French class ever,” kind of a lot of stuff like that.
Drew: [00:07:19] Yeah.
Brianne: [00:07:20] And so at this point, he’s made it, he’s dropped out of college. He decides to go back. He gets diagnosed, I think somewhere in his twenties, and he’s able to get some accommodations to get back to college. And in the 80s I don’t know exactly what that looked like, but I know that he… when I was a kid, he was using early versions of text to speak software.
Drew: [00:07:41] Oh, cool.
Brianne: [00:07:41] So he had early versions of Dragon, which were not very good at that time. And he was just like, “This is the worst thing in the world, but…” So this is another thing that was kind of going on around me that was normal to me, that I had never really thought about.
Drew: [00:07:55] Yeah.
Brianne: [00:07:57] So as I’m going into the gifted program and trying to make sense of… at eight years old, of getting this designation and what it means and getting put another class, I have my dad who had a really different education experience, but now has a PhD, being like, “This is just one part of it. Everyone’s smart in different ways,” trying to really aggressively push back on this narrative that’s like, “You’re special because you’re smart.” And… because he had been diagnosed with ADHD at that time, and he actually was a specialist who worked exclusively with kids with learning disabilities. So that was his entire practice when I was a kid.
Drew: [00:08:33] Okay.
Brianne: [00:08:33] And so another thing that that means is that I was… my parents had split custody, so I lived with my mom, and I spent every other weekend with my dad, and then he would come take me out on Wednesdays, which was a lot to see a non-custodial parent, but also, it meant that every other weekend at my dad’s was very casual conversation about ADHD all the time. The entire culture had ADHD coping mechanisms that were intentionally built-in, like lots of list-making, lots of schedule-making, all of this stuff. And they called it the A-thing, and it would be like, whenever in a conversation, someone said a non-sequitur, it would be like, “Oh, that’s an A-thing… what was the thread? Where did that come from?” So, meanwhile, I’m being put into a gifted program that I don’t know to label as special education, and also I’m being given all of these coping mechanisms for what’s being called… what my dad would call ADHD, but I was never evaluated for. And basically what I can see now from adulthood is that I got a lot, a lot, a lot of coping mechanisms. And invisible accommodations just built into my entire environment that I couldn’t see from a very young age.
Drew: [00:09:42] Yeah.
Brianne: [00:09:43] So, okay. Those are two of the three things, and then the other thing that started happening around that age, is that my mom was navigating a lot of her own mental health stuff. And so right around the time… around the age… between eight and eleven is when I think back to it. I don’t want to armchair diagnose or make meaning of the situation that wasn’t there, but the way that I would explain it now is that she was probably processing a lot of trauma that had isolated her from her family, and so 1.) I was hearing about a lot more of it than maybe an eight to eleven year old needs to hear, and 2.) one of the reasons that that matters is that there was a lot of… I don’t know how to characterize this… fluid relationship to reality, I will say.
Drew: [00:10:28] Sure.
Brianne: [00:10:28] And when you’re a kid and someone… your main person in your life has a fluid relationship to reality, you don’t necessarily have the tools to interpret that critically.
Drew: [00:10:38] This is sounding very familiar to my life experience.
Brianne: [00:10:42] Yes, I suspected that it would, for a variety of reasons. So that also started around that time, and it was… I think kind of peaked while I was in middle school, during the years that I was in middle school, but… Okay, so that’s a bunch of stage-setting that I didn’t have context to even think would be relevant for all of this story the first time that I talked through it, so that’s some background about my health as a kid, which is that, I was probably… I mean, I was almost certainly neurodivergent, but I was in special ed. I was having a lot of body stuff, but all of a sudden, I switched to a much better environment. And so my body stuff just didn’t seem that critical or it wasn’t as disruptive. And I was in an environment where mental health was tricky.
Drew: [00:11:29] Yeah.
Brianne: [00:11:30] Okay. So then moving forward, I already talked about a lot of the anecdotal health memories that I have in episode one, which is like, I had really bad neck pain when I was a kid, and I lived in Canada so healthcare was socialized medicine. So it wasn’t a big deal to go and look into stuff. So I got x-rays, they came back negative. I had a lot of phlegm when I was a kid, a lot of mucus. That was pretty gross. I got some kind of a GI tract investigation. Again, came back pretty normal, “We’re not worried.” When I was 11, this is actually the same week that I got my period is the first time that I, on a family hiking trip, kept lying down on the side of the trail and being completely unable to get up. And everybody in the environment thought that it was a mental health thing. So everybody is reading it as like, “What’s going on with Brianne? Why won’t she fight through it? Why won’t she just get up? We get it, you didn’t want to come on this hiking trip or whatever, but stop throwing this temper tantrum, you’re going to die in this crater or whatever. It’s going to be cold overnight.” And I have no idea what I was thinking at the time. I had no words for describing it. I didn’t have words for describing it for literal decades. And now I’m like, “That was orthostatic intolerance.”
Drew: [00:12:44] Yeah.
Brianne: [00:12:45] That was almost certainly POTS. That’s exactly what that feels like, so… and similarly there was another story that I talked about in episode one in 2015, to just aggressively jump the gun for a second, where I was like, “Yeah, I was out with my friends and it was late and I had just changed a bunch of things about my life. And then I blacked out on the corner,” and I’ve blacked out a lot as a person before, but never like that. And I’m like, “That was POTS. That’s what that was.” Okay. So that’s a lot of the stuff…
Drew: [00:13:15] Yeah. Like, “I need to be horizontal right now.”
Brianne: [00:13:19] Yeah. Yeah. I’m just going to curl up, and we’re both horizontal right now as we’re talking, so that’s relevant.
Drew: [00:13:25] Yeah.
Brianne: [00:13:26] Okay. So yeah, and another fun fact about me when I was a kid is that I could put each of my feet behind my head, and knew that human-pretzel style. And in fact still can, although I didn’t do it the whole time. I just discovered that recently, and I also could do all of the splits. So I was a pretty flexible kid and thought of myself as a flexible kid and thought of myself as a kid who bruised easily and thought of myself as a kid who got sick easily. But none of those really… I think that was because I was benchmarking against the people around me, but… still those were within the normal standard deviation. Okay. So then I think the next major thing was that when I was 16, I got mono. So I was working at a summer camp, which are disgusting just everything about summer camps are disgusting.
Drew: [00:14:15] Yeah.
Brianne: [00:14:16] And I think one of my coworkers had mono, so probably everyone got it, frankly, but different people’s immune systems responded differently. So I was working at the summer camp. I knew that I wasn’t doing well. I was getting more and more fatigued, beyond what I would already expect for me. So it had already been a problem when I was 16 that I had more trouble than other people activating or getting into things, but I think it’s because of something underlying in my brain, for sure. I’m labeling it maybe as depression, I’m honestly not sure. And so I got mono, I went to the walk-in clinic. They were like, “Oh, it’s probably strep throat, take these antibiotics and go back to work.” So I took a round of antibiotics and went back to work. And then I was just getting worse and worse, and the last week of summer, I had a fever the whole week. It was my week off, and it was awful. And then finally, I go to my doctor. I was like, “Well, they gave me some antibiotics. So maybe it’s that.” And she’s like, “Sure, here’s more antibiotics.” But she also actually tested me for strep and was like, “By the way, that was negative. Come back, please.” So she was like… I assume they did blood work for mono, but she was like, “You have mono. Your mono is very bad.” I was… my lymph nodes were so swollen that it was like a straight wall down from my jaw line. Basically I was extremely inflamed. I want to say your spleen is at risk during mono.
Drew: [00:15:37] Yeah.
Brianne: [00:15:37] And that was also very tender to the touch and kind of noticeably inflamed as well. So she was like, “I need you to stay home for five weeks straight because of how sick you are, and then we’ll talk.” And then this is another story about how being in gifted education was invisibly accommodating, which is that I missed… one of those weeks was a holiday. It was the fall break. So I missed four straight weeks of school. And my high school was self-paced. It was a completely experimental high school. It was a public school, free to attend. It was the only high school that offered gifted education. So it had four gifted… four middle schools with gifted program streaming into it. Plus it had all of the other alternative ed models that the city was messing with were at my high school. Or maybe there were two high schools. It doesn’t matter. It was self-paced is the takeaway that I was trying to say. So I’m really sick. I’m missing all of this school, and nobody’s talking about holding me back, nobody’s talking about truancy, nobody’s talking about any of that stuff. Honestly, the only thing that happened is that my guidance counselor, who was also incidentally, a friend of my mother’s was like, “Hey, do you want to study for the SATs during this break that you have?” Because we don’t have any, college level standardized testing in Canada.
Drew: [00:16:51] Right.
Brianne: [00:16:52] She was like, “It might just keep your brain busy.” So I was like, “Uh, sure.” So she gave me an SAT study guide, and I literally took the SATs because of that.
Drew: [00:17:01] funny.
Brianne: [00:17:02] Yeah, just a weird thing that actually kind of majorly impacted my life, and this is in… so based on how old I am, this is in 2003, I want to say, And so the internet didn’t… well, the streaming internet didn’t exist, so the internet existed, but there was no streaming television. So I was watching Murder, She Wrote in syndication all day. And then maybe I think I got my parents to get The Sopranos on VHS from Blockbuster, like season by season so that I could watch them in order, which is very difficult to do without streaming television. So it was… I know that there are many people who have been sick constantly since then, but it was very different to be sick at home pre-internet.
Drew: [00:17:45] Yeah.
Brianne: [00:17:47] Okay. So then I basically started going back to school, and I just kept missing first period. So I found that if my sleep was disrupted, my lymph nodes would always hurt. And I knew that’s what it was because they’d been so inflamed. So I didn’t fully recover, but I recovered enough that I could participate in everything again. And because I had pretty much always been dragging dysautonomia behind me and all of this shit behind me, I didn’t… I wasn’t like, “Oh, this mono was a turning point.” It was just like, “Cool. Here’s another thing that doesn’t work the way that it’s supposed to now.” So…
Drew: [00:18:21] Yeah, disease sort of slowly gets normalized.
Brianne: [00:18:26] Yeah. Yeah. And I was still like… I think one day I… my first period class was calculus, and my calculus teacher was like, “You’re falling behind and nobody ever catches up on this class. And like, if you don’t get your act together, blah, blah, blah.” And I… that was the extent of someone being not very nice to me about my health at school, which is not very much. And I think I went to the resource room crying just from that conversation. Cause I was like, “I’m trying so hard.” You know, like, “I’m so sick.”
Drew: [00:18:54] Yeah, because even though it’s not like that bad on the scale of possible things that could happen that still sucks to have a teacher talk to you that way, it really hurts. And especially. I don’t know, in my experience being labeled as gifted means that a lot of your self esteem gets wrapped up in, not just your grades, but also how your teachers treat you. So to have a teacher suddenly not like you after years of maybe having so many teachers be like, “Oh. You know, Brianne is a joy to have in the classroom.” It’s a really big hit to your self esteem.
Brianne: [00:19:40] Yeah. And it’s like… and there’s all kinds of weird stuff that I know would get caught up in the way that people were… probably everybody in this class has ADHD. So we could schedule our own tests. Self-pacing is really wild, but everybody is already going through this system in really unusual ways. And I think probably she had some experiential ideas about when students needed a motivational talk because they hadn’t been continuing to activate, but that wasn’t what was happening at all. And I test well, which is also, I think, related to all of this stuff. It’s not a usable skill, but I’ve always done well on tests. So there’s never been a cause for concern if you are a teacher who is evaluated on those things. Anyway. So, that was high school, so pretty good. And also relevant maybe I’ve never been very athletic, but I played water polo in high school. So… not a flexibility sport, kind of a context for… blah, blah, blah. Not super relevant yet, possibly later.
So I ended up going to school in the States, specifically because I took the SATs. I would never have looked, but I have dual citizenship. And when I was looking, my grandpa who was in his 90s and who was from Iowa… he was like, “I think you should consider the college that I went to.” And he… my grandpa’s college stories are hilarious because he was… grew up on a farm in Iowa. I want to say that his mom was a German immigrant and maybe… I don’t know. I think his dad was just a longer ridiculous settler story, but my grandpa ends up going to college during the depression and he’s like, “I couldn’t pay tuition. So I rode the train to get there and dated the dean’s daughter so that I could pay tuition late.” I was just like, “What? What are you talking about? This is an absurd story in every way.” Anyway, I went there for some reason. I was like, “Well, I took the SATs. I might as well apply to American schools. And if I don’t get into any, then no big deal.” But I got in, I ended up going.
Drew: [00:21:50] To U of Iowa.
Brianne: [00:21:51] No. So I went to Grinnell college, which is in the middle of Iowa.
Drew: [00:21:55] Oh, okay. Yeah. One of my friends from high school goes there. I asked about U of Iowa, cause that was one of the three schools that I applied to.
Brianne: [00:22:04] There you go. Yeah. In the middle. And I feel like Iowa… is it U of Iowa that has a really good literature grad program.
Drew: [00:22:13] Yeah.
Brianne: [00:22:13] This doesn’t matter.
Drew: [00:22:15] Yeah. It is.
Brianne: [00:22:15] Okay. I know Iowa is known for its writing programs.
Drew: [00:22:19] Yeah that’s why I applied.
Brianne: [00:22:19] So, I went to Grinnell. Yeah. And a lot of people that you know have gone there. I feel like a lot of writers that I like, so I always hear about it in that way. Yeah. But Iowa, so I went to college and my first year of college was… this should have been a sign, but also… I was 17 when I started school just cause when my birthday is and conflicting systems and stuff. I was 17 when I got to college, and I could tell my first… so first of all, my first year I drank a lot. I’d been drinking… I drank socially in high school, but not very often, and drank socially more in college. And first year, something that I started to notice but had no language for was that 1.) I had a lot of… what I would now describe as… I had an anxious attachment style, so I would get really worked up over communication stuff in a way that was unfamiliar. But also what I was more aware of was that this first year of college was… and I was living in the dorms was the first time that I had never felt like I was living in the middle of an active crisis. So at home that felt like an active crisis all the time. Partly because it felt like my mom was navigating an active crisis. Plus, now… probably because most of my friends were all undiagnosed neurodivergent or most of them were… a lot of them also had kind of complicated trauma things going on, and I’m not saying that to say that neurodivergence causes trauma, but I think we know anecdotally that there’s a pretty high crossover of navigating the world with an undiagnosed lens that you can’t see. So. Basically everything felt like active crisis all the time in high school, because everyone I knew was, my own home life was, and I didn’t have good language for that either because I grew up in the suburbs. So I grew up in a pretty… well, calling it financially stable would maybe be misleading, but I grew up in a relatively financially stable environment in the suburbs. And my closest friend growing up had a very financially insecure… they moved a lot. So I was really, really hyper aware of all of the privilege that I did have. But I did not have enough context to see that that doesn’t mean that trauma can’t happen. They can coexist.
Drew: [00:24:41] Yes.
Brianne: [00:24:42] So I got into college and I was just melting down a little bit because my nervous system was not stimulated in the way that it was used to being stimulated by crisis. And so I was aware of reacting disproportionately to things sometimes, or… I could kind of see those happening, but I also was like, “Okay, interesting.” And also I’m 17/18, and I’m in college. I’m… whatever doing college things. So that was, I think, a chapter that I did not talk about as much on the podcast, because it has been really… those depths have been plumbed a lot in other projects that I’ve done. That’s when mental health and trauma stuff started to kind of take shape for me, but things didn’t slow down enough to process for like, five more years. So my second year of college, my mom was diagnosed with cancer, and it was a skin cancer. They thought it was pretty treatable. They were pretty optimistic, but still not great.
Drew: [00:25:47] Yeah, Yeah. No, that’s hard.
Brianne: [00:25:50] Yeah, so I was like… I think kind of immediately went a little bit more into… I don’t even know what to call it now, but coping poorly, I guess. So the Thanksgiving of my sophomore year, I went home just so that… to do my week of driving my mom to chemo cause my sister had already done it kind of… that’s what was happening in the non-school side of things. And what I think now is… I think I survived the course load of college because I had gone to a self-paced high school that relied entirely on my own other coping mechanisms that I had learned because I was incidentally raised in a household that was very focused on ADHD coping. So that was happening. And then… so my mom was in treatment and I was drinking a ton, and everyone around me was drinking a ton. So that was not a big deal. However, most people weren’t drinking to blackout like three nights a week, as far as I was aware. And it was sitting as the kind of thing where I was like, “That is maybe concerning, but it’s not the most concerning. It’s not what I’m the most concerned about.” And the fallout, which was always contextually okay. One of my friends was like, “You know, sometimes you wake up, and you don’t remember what happened. And it’s like a shame hangover.” I was like, “I know exactly what that is. And also everyone around me is in that same space.” And everyone around me is in a perceived-safe campus environment where we’re all like, “That’s okay, this isn’t the real world.” You know, like, “We’ll learn to be safe later.”
And then… God. Okay. I have to think through this timeline. So, and then, my mom went into remission, which was great. But during the same time my dad had had a head injury, and he was rapidly deteriorating in an unexplained way. And so about six months after my mom went into remission, my dad was diagnosed with Alzheimer’s, and my parents were divorced. So this is two separate units. So my dad was diagnosed with Alzheimer’s when I was 19. And that did not help in the scheme of being a functional person who knows how to cope with things. So I was like… sophomore year. Yeah, still drinking a lot. And then I started dating this guy who definitely also had a substance abuse problem and other stuff going on. And so the impact of that, which I will mention casually is that then my junior year… oh God, no, this is… okay. A bunch of things that I didn’t even think to talk about on the podcast, barely, but now play into this whole story are about to happen at once. My junior year of college, I was dating this guy who was… who had gone through a lot and was not handling it well is what I’ll say, and I… and a bunch of my friends were abroad and I fell off my bike. And this is my second bike accident that sent me to the hospital actually, so I fell off my bike and got a concussion when I was in high school. And I forgot a couple of days for a while. And this time I fell off my bike, and I think the pedal tore open my foot. Cause I was biking literally across the street, from one campus building to another campus building. Cause I immediately had to go… I was going from class, to eat, to work and I… there was just no time. So I was on my bike. And I went off of the sidewalk, and I tried to get back on and I tipped, I was barely moving and the pedal tore open the side of my foot, right below my ankle. And it was gross. and this is… maybe this has been talked about before, because actually Clare from… who was in a really early episode of the podcast, who went to college with me, was the first person that I saw. I was like, “I just fell off my bike. I haven’t looked at it yet. I have this problem where I faint.” Because I just… I had… okay.
Drew: [00:29:46] Right!
Brianne: [00:29:47] So I skipped over that part too. So the whole thing where I like went to the ER, because I fainted at a back health lunch and learn, which I talk about in episode 50, had happened like three months previously. So I have literally just been told that the thing where I have triggered fainting is called vasovagal syncope. So I’m like, “I have an injury. I think it’s gross. I can’t look at it because as soon as I look at it, my nervous system is going to freak out.” And Clare is like, “Don’t worry. I want to be a doctor. I’ll look.” So I lie down on the porch of the student center and pull up my pant leg. And Clare is like, “Yeah, you need someone to take care of this.” So someone from security, I think drives me to the only hospital in town, and I get stitches. And basically, I had stitches for three weeks or something. And they told me to get them out after that long. But what happened is, it was like… this is going to be gross. Are you ready for something slightly gross?
Drew: [00:30:45] Yeah.
Brianne: [00:30:46] You’re like, “Yeah. No problem.” So it was a Y-shaped cut.
Drew: [00:30:49] I’m braced.
Brianne: [00:30:49] And it had been stitched together in a Y-shaped manner. And the middle of the triangle of the Y had completely died. So it was just a triangle of black flesh stitched to this other. Slightly dying flesh. So basically I had to have wound debridement surgery, which I’d never heard before, but it means like cleaning. They had to clean the wound because the first stitches had not worked, and nobody had any questions about that, I guess. They were like, “Yeah, I guess this happens sometimes. No thoughts.” So I had surgery… this is the only surgery I’ve ever had, actually. I went under, they cut away a bunch of tissue, restitched it. Blah, blah, blah. So that is relevant actually because now I know that poor wound healing is something that people should pay attention to, but at the time I was just like, “Well, this sucks. I have the worst luck. Why do I have such bad luck? What a mystery.” And so that Halloween… actually, no, this was the November. Extra details that nobody needs. My college had a party in November, like an annual all-campus party called Fetish, which was what you think. It was just Halloween II: Grosser Halloween, the way that people interpreted it. So I… and the weekend of… maybe I was using a wheelchair for Halloween, I was using a wheelchair for one of these parties. And then maybe this one… I think this is the first one where I was walking again after the surgery. So I was like, “I’m dressed up. I am participating in the party.” And unfortunately this guy that I had been dating, who had a lot of shit going on… we’d just broken up, and he was not handling it well, and he had had too much to drink. And so I walked into the party and yeah, he immediately, after I walked into the room, he attacked somebody that he didn’t know, just spontaneously attacked somebody basically. And he… this is story is ludicrous. And he had been wearing a belt around his neck as part of his costume because his costume was autoerotic asphyxiation. And so he took the belt off, and that’s how he went after this guy. And so I walked into the room, this happened. I’d been drinking. He’d been drinking significantly more. We weren’t together either romantically or socially in this moment. I don’t know how that kind of timing worked out. But…
Drew: [00:33:13] Yeah. You were just both separately drunk?
Brianne: [00:33:16] Yeah. Both separately drunk and… maybe I was the catalyst or maybe it was a complete coincidence. I literally have no idea, but I see this happen. I am somebody who, even if it didn’t have anything to do with me, immediately runs the other way from fights because I’m afraid I’m going to pass out. And so it was deescalated very quickly, but I went outside. I panicked, threw my wallet in the trash and then went and sat somewhere until I saw somebody that I knew… completely, completely a mess. and so that more or less ended up resolving, the longer version of the story is that he ended up leaving campus, but I… Okay. So my foot recovers, I’m living my life again, but when he came back to campus, I started having nightmares. So, and they were really like, “Okay, subconscious, I get it.” So, the first one… and I don’t remember my dreams very often, so that’s also significant. I’m not having weird dreams all the time. I never have dreams. And so I had dreams, and they were just all him perpetuating violence. So I was like, “You know what? I should take some action about this. This isn’t a healthy thing going on.” And this was my senior year of college, so at this point I was like, “I recognize that perhaps I have not been coping with some of the difficulties in my life in healthy ways, and I would like to take action.” So I go to the student mental health center and I’m like, “Hey, I’ve been having nightmares about my ex-boyfriend because I saw him attack somebody. And I thought, maybe you could help me with that.” And she was like, “Yeah, that does sound tough.” And it was just like… everything that I said, she just affirmed. And I was like, “Okay. I can tell that your treatment is in affirming people, but I’m not confident that that’s what I need right now.” And in retrospect, I’m like “Also, if somebody comes to you telling you that they witnessed a traumatic event and started having nightmares, then maybe you should talk to them about PTSD”
Drew: [00:35:14] Yeah.
Brianne: [00:35:16] Perhaps.
Drew: [00:35:18] Seems like something to bring up.
Brianne: [00:35:20] Yeah. So… but I didn’t know that at the time. So that, and then what’s happening with my body, and then my body is otherwise the same, so I can’t stay up all night or I’m in pain. All of the stuff that I think I’ve talked about it in other episodes, but pretty static. And then I went straight to grad school because basically… the way that I would describe it now is that basically I was in constant fight or flight mode all the time. And I was like, “How am I going to make decisions about my life? My dad is dying right now. I am not going to go home and go back to the restaurant job that I worked last summer. Not because restaurant jobs are bad, but because I will lose it on somebody. I am not in a place where I can go back and work full-time in the service industry without something really terrible happening, probably. So I’m going to just delay my return to the real world for a couple more years.” And so I applied to grad school, and I didn’t know what I wanted to do with my life at all. And I was like, “Well, when I was younger, I wanted to be an architect. I should do that.” So I applied to architecture school, and I got into Michigan, which was one of the… which is a good program. So I went, and I took out a bunch of loans because I was like, “This is what everybody does. Let’s get into tons of debt to get a graduate degree because of course the graduate degree will put me into a profession where I will earn money to pay back the debt.” The classic promise of education. And so while I was in grad school, my dad died, which was hard of course, and it also… the program itself was really intensive. So I now know that architecture is a really hazing kind of field like, needlessly. It has a lot of professors telling you, “You should never sleep again, if you really care about it.” And if you go into the profession, the intern years are very similar, and I don’t think that it’s appropriate or understandable in medicine, but in medicine, you’re like, “Well, maybe doctors need to perform in these extreme conditions in an emergency.” Which I do not mean to say flippantly because we’re living through that emergency now. And I don’t think training prepared anyone, and it’s showing us that it’s just hazing. And then in architecture, that excuse doesn’t exist because there’s no reason for do that
Drew: [00:37:43] The stakes are not that high.
Brianne: [00:37:45] No.
Drew: [00:37:46] Yeah. My mom dropped out of architecture school for that same reason.
Brianne: [00:37:50] Yeah. I had no idea. It’s bananas. It’s very intense. So I was in architecture school, and I was not staying up all the time, the way that everyone else was. And I had a pretty bad episode of… a couple of weeks of vertigo, and also my dad died in the middle. So I was just not coping very well, but again, I think that the reason that I was able to finish is that I had… that was the one thing that I… courses in school were the thing that I had learned how to completely tune out for and do, but it was taking its toll. The summer after the first year, I think, I was really basically bed-bound for two months, but I thought that I was just a depressed person who hated myself. I was just like, “Oh, what are you doing? You can just get out of bed and choose to cook, and that’s not what you’re doing.” And of course I was grieving. So then my mental health really was not great. And then… it was the same. I think I worked my third year of grad school, my thesis year, I was in school, and then I was working in a restaurant, like three shifts a week, but I think I was working Saturday night. So it was Killing myself. I was in a lot of pain all the time. I would not have called it pain because I’d been in pain forever and just was like, “Oh, it’s hard to have a body.” And after I finished, I moved to Toronto with my college boyfriend. So we’d been together since I think my junior year of college. And we lived in Ann Arbor together, and then we moved to Toronto together and it was like, once we got to Toronto, I had enough savings from the restaurant that I was not feeling panicked for at least a couple of months. So I was like, “Okay, I’ll look for a job and I’ll rest.” And it was like, same story again, just for a couple months, getting off the couch was basically impossible. And then slowly I would get back to a place where I was able to go for walks or go for runs or go to Starbucks.
And I don’t know how I was explaining that to myself. Honestly, I have no… I don’t… I think I was calling it all mental health. And one of the things about my mom’s mental health was that for a long time she would explain this kind of stuff and say that I had been possessed. She was like, “It’s not Brianne’s fault. Brianne’s possessed. She doesn’t mean it. We just have to…” it’s not really associated with theology, so I can’t explain it that way, but that’s in there. Like, “There’s some negative energy and if we can just get the negative energy out, then you’ll be able to go back and do your thing.” And so that was a really foundational concept. And also when I was little, cause I was in so much pain, I had been to see a chiropractor. I had seen multiple chiropractors, many times I had seen kind of miscellaneous other bodywork people. I had seen all of the stuff, all of the weird stuff, I had been doing. And so a lot of kind of woo-woo… I don’t even know to call it… was in this space and a lot of toxic positivity, basically. So I’m in Toronto, finally, I’m like 25. I got a job that started part-time and then it was at a coworking space. So I was working from home a little bit, and I was working in a coworking space a little bit, and I hadn’t even looked for architecture jobs because I was like, “I couldn’t hack the hours.” Me, a regular healthy person, who just can’t hack the hours and has to accept that about herself as a character flaw, question mark. It all makes sense so far, right?
Drew: [00:41:24] I, a twenty-something, in the prime of my life, just can’t work this job.
Brianne: [00:41:30] Yeah. Yeah. So I was… you know, I’m 25. I’ve already determined not to pursue architecture because I know that the hours won’t work for me, and that’s because I’m spoiled I guess, and just don’t want to give up my leisure time. So anyway, I start this job, and the situation of it ended up being really great for me for all of those reasons. And I talked about this a lot, I think in episode one, too. So because I was in a coworking space, I worked there for five years, and I could lie down all the time. I worked lying down at least 50% of the time, and it was no big deal. And this, I think about a lot, as it relates to gifted education, which is that coworking spaces are a really specific kind of space, targeting really specific kinds of people and companies and workers. And a lot of them are trying to mirror the environments of tech companies. So at the time that I started that job, one of my friends had just started working for Google. And so, I’ve been on the Google campus in San Francisco… not in San Francisco, but in Mountain View and been around there. I know what they’re up to and you can see it. You’re like, “Oh, you have snacks everywhere. You have healthy snacks and fun snacks. You have activities. You have massage.” You can tell what they’re doing, which is like, “You’re making your workers as comfortable as possible so that they never leave.” And coworking spaces aren’t quite the same, but they’re employing a lot of the same things to basically blur work-life boundaries. But the other impact of that is that they’re accommodating a lot of people without calling it that. So it was like, “Oh cool. I can…” for me, it was that I can lie down all the time. I think for a lot of people at Google, it’s like, “I don’t have to prepare my own food.” If I didn’t have to prepare my own food, my life would be a lot easier and I could work more.
Drew: [00:43:17] Yeah. For sure.
Brianne: [00:43:19] The trade offs are obvious when you’re Google, and all of a sudden, they’re not obvious when you’re trying to come up with… support net… care net? What’s the word? Social safety net. When you’re trying to come up with a social safety net, all of a sudden all of these concepts are completely mysterious, but I basically think that I got to… half of this story is how I got to maintain my denial for so long. And I got to continue to maintain my denial, I think, because I had a job where I could lie down all the time. And it was only a 40 hours a week job, anyway. I was never working after five or if I was, it was a special occasion… a lot of things about it. It also started at $12 an hour. So I wasn’t… not that architects make a lot of money, but I wasn’t making architecture money in this job, but I was pretty functional. So, continuing to be in denial… and so I got pretty stable at that point. So there was a little bit more disruption, my boyfriend and I broke up, so I had to move and… we broke up cause I was like, “I think I’m a mess.” He was in grad school then, and he, I think, went home for spring break or something. And I went out and did some stuff when he wasn’t there. And I was like, “I haven’t been doing anything. I’m not functional. I’m not functional, and you are supporting me in ways that we’re not seeing or acknowledging. We’re not calling this a caretaker dynamic, but it is.” And like, “I don’t want to be non…” nonconsensual is the wrong word because he was not… it wasn’t directional, but there wasn’t an agreement. We had never created an agreement that this was going to be the dynamic, and it was just kind of happening. And on top of that… yeah, just all of it, it was happening. And so he went home and I was like, “Okay, when I have to take care of myself, I don’t really do it better, but I’m pushing myself better and I’m confronting some different things. And ultimately, I think we have to break up because I don’t think that I’m going to get myself together, whatever that looks like, in the context of this relationship. And that’s not you and it doesn’t have to do with you.” So we broke up, I moved in with a new person.
I was now working a full-time job in a coworking space where there were lots of people and interesting young people who were doing things. So it was a really good transition time, and I ended up. Through the context of this coworking space, starting a writing group. Cause basically, what was happening at that point of the, “I don’t have any of the language for anything that’s going on,” is I woke up at 3:00 AM with paragraphs cycling through my brain that are just narrative paragraphs. And I’m like, “Fuck, I need to write this down.” So I’d wake up in the middle of the night and write a deeply personal essay about miscellaneous trauma and be like, “Okay, getting it out helped. Good note.” But I was like, “What the hell am I going to do with this?” Because it’s about, you know, my mom thought that I was possessed or my mom thought that all of my friend’s parents were in cults because that was a part of her whole thing. And that was messed up. And I couldn’t talk about it. Or when my dad was diagnosed with Alzheimer’s disease, when I was 19, I didn’t know anybody who had been through that and I didn’t know how to talk about it. And so I started a writing group basically on that pitch at the coworking space, I was like, “Hello. Do you write about things that you can’t talk about with anybody because they’re too personal? Come to my writing group.” And some people did.
And so it kind of evolved. And then we ended up starting an event in Toronto called Stories We Don’t Tell, which isn’t happening right now because of the pandemic, but was still… it’s still an entity. So it ran for five years. And basically, I was there for the first two. So I did a year of writing group and then two years of stories we don’t tell. And while I was doing that, because I was one of the co-founders, I told a story almost every month because we’d have to round out the lineup. So we were bringing… new people came in, new people wanted to participate, but new people are not used to turning around really personal stories in two weeks. So we were just trying to pad it until people were ready, and so I did something almost every week. No, sorry. Almost every month for two years, I did at least 15 to 20 events, and it was therapy. That wasn’t the point, but I had… I’ve glossed over a couple other times that I went to try to see therapists, and I just had the same outcome of me being like, “I think I’m a mess.” And them being like, “Good for you.” This isn’t You know, I’d be like, “I think I need to deal with this.” And they’d be like, “Yeah! Right.” I’d be like, “Okay, if this is what therapy is,” and I know it isn’t always, but like, “if this is what therapy is, I do not need to pay for it. I’m sorry.” And so I think for me, I stumbled onto this thing that had a really, really profound effect on my trauma processing that I didn’t… that wasn’t intentional, and that I wasn’t even fully aware of at the time, but… oh, I also, at the same time, right after I moved to Toronto, I went no-contact with my mom. So Will and I broke up, I stopped talking to my mom, and I was in this new job doing… in this new context. So I was like, “Okay, I’m just gonna get through it.” And the idea… this was the intention of the Stories We Don’t Tell, but it was like, once you’ve talked about some of this stuff in front of a room full of people, and the room… the audience is designed in such a way that, you can see people you’re not lit out, or whatever, but you realize that afterwards you’re still a person and nobody hates you. And it has this really good feedback effect. If some of the gremlins in your brain tell you that talking about the tough stuff will make everybody hate you because it’ll like… you’re too much.
So I don’t know, over the course of like three years, it had a huge impact on all of that stuff. And one of the biggest things is even… with alcohol, so I did not make any conscious effort to change anything. I think because I was still functioning enough that it wasn’t the biggest fire. But one of the impacts of just doing this is I was still drinking socially all the time, and I almost never blacked out anymore. And I was like, “That’s weird. I can tell that I’m doing better, but why would that be the case?” I have a few ideas, but I was just kind of aware of it. And I was like, ” Okay.” Maybe previously I had been like, “Cool, I need to stop that completely.” And substances are so complicated because we all have different relationships to them. But for me, I was like, “Oh, after a couple of years, for me, I can see really clearly that alcohol wasn’t the problem.” Something else was the problem. And when I drank, I, of course, it’s a coping mechanism. I’m numbing. So whatever’s going on in there. I’m gesturing vaguely at my brain gremlins take over. So that was… so this is when I was like 27, 28. This is the pinnacle of my most functional time. So all of a sudden my mental health is really great. I still don’t have language for why it may have improved or why it may have been suffering previously, but I can just tell. And I’m really busy. I’ve become more active. Some of that was also coping mechanisms. I was like, “Okay, I have to get, I have to find ways to get myself out of the house.” I’m a routine person. I was volunteering. I was doing a lot, honestly. I was doing a lot, and whenever I thought about it, I had crushing anxiety about when there would be time for rest in my week. But I was like, “Hmm, that’s weird. Maybe other people are also burning out.” But everyone else was fine. So that was around 27 or 28.
And then that’s when… I think the next catalyst is that I moved into a moldy apartment. So I was living in a basement that was fine. A basement with no windows in the main living area at all, and one small window in my bedroom that I almost certainly could not have escaped through and was definitely an illegal apartment. Yep, great times. In that apartment, I wasn’t really aware of anything, and I moved into a new above-ground apartment. It was bigger. Everything about it was great. And there was a gross patch on the bathroom wall that was obviously mold that had been painted over, but I was like, “Whatever, this is what it’s like to,” I lived still in Toronto. So, “This is what it’s like to live in an apartment in a city,” if you can’t afford the fanciest condos available, new construction, which frankly also, I think are probably environmental pits a lot of the time, but I was like, “No big deal. If it was a problem, someone would have done something about it already.” Like, I don’t know what I thought. but I got eczema right away. And so, I talk a lot about this in the episode one, too, but the eczema was the first thing for me that was the beginning of the cannot-come-back-from decline, as opposed to the ignore-everything-and-keep-going, which had been working for me so far, as far as these things go. With at least three periods of spending many weeks in bed that I’m not thinking of as a pattern. So I did the eczema, and then I changed my diet. Which I talked about a lot. I did the Candida Diet. It made my eczema go away, but removing alcohol, removing caffeine, removing sugar from my system was a hard hit. And so I couldn’t push through anymore. It was like I did the diet, the eczema went away.
I started reverting to what is like… I just saw the word chronotype. Did you see this floating around Twitter? The concept of chronotypes, so it’s basically like there’s a natural deviation in our, what’s the word? Our rhythms when we… circadian rhythms. And those are chronotypes. So my natural chronotype basically is go to bed at 7:00 PM and wake up at 5:00 AM. That’s what my body prefers, and so I started waking up earlier after I changed this diet. So I started going to bed earlier, and I felt really good if I stayed exactly in the pattern which is not possible when you were really busy. So I basically just felt great for a couple of months. I started a new job. It was an actual nine to five job, sit at a desk the whole time. And that was okay for a while. And I just deteriorated from there basically. So I got more and more exhausted. I was getting just getting worse and worse in other ways, but my skin was better. And now, in retrospect, I’m like, “That was mold.” I moved into a moldy house later, which was when things got really, really bad, but basically that entire period… so I’m going to do a quick list summary because this is… I talk about it so much in episode one, but it was like eczema, diet, crushing fatigue, and orthostatic intolerance episodes. And then, antifungal prescription treatment that was actually pretty effective and brought me back for a while. And then we moved into a moldy house again, and I became completely bed-bound, stopped working, could barely converse, pretty much lost my mobility, recovered, left that house, incredibly was able to do that. Had a ton of support for this part, left that house, recovered, and that’s kind of where things were when I recorded episode fifty. So now I look back at this entire time and I’m like, “That sounds like it might be a mast cell problem.”
Drew: [00:55:03] Yeah.
Brianne: [00:55:03] Because 1.) Mold, huge mast cell trigger, hugely correlated with EDS turning into ME, which I like knew… I certainly had heard of chronic fatigue syndrome. 2017 is when I probably first saw the words ME. I hadn’t even looked at it… since I was a teenager, I’d always been like, “Well, maybe I have chronic fatigue syndrome, but everything I know about it tells me that if I say that people will just be mean to me. So I’m not going to worry about it.” So yeah, like, mold, the diet thing, I’m also like, “That sounds…” probably, I moved into a moldy apartment. The mold tipped… overflowed my histamine bucket, so I started to get eczema. I changed my diet, which reduced the overall load, but things were still messed up because I was still in a direct exposure situation. That’s what I think now, and similarly in the other house, I’m like, “Yeah, that was the toxic mold exposure. And probably that caused a mast cell cascade type thing.” So that’s my re-interpretation of those events. And then, after that, I… we moved to Massachusetts. We live in an old house that is so old it’s plaster, which can’t grow mold. So it is not perfect, but it’s… I don’t know.
So far… the biggest thing that I’m aware of now is when I have really bad fatigue, when I’m here, it’s all dysautonomia fatigue, which is like orthostatic intolerance. And it’s not “my brain is filled with bees and doesn’t work” fatigue, which I’ve now associated with a histamine reaction. Because when I lived in the mold house, I couldn’t… my brain was filled with bees all the time. And I just called that fatigue. Now I’m like, “Oh, that’s a different thing.” Okay. So then in Massachusetts, it was the first time that I ever got real medical care, I would say, honestly, despite this story being entirely about pursuing medical care. And so in episode 50, that’s all I talk about, but I found out I have cervical stenosis. I found out I have small fiber neuropathy. I found out I have… I confirmed that I have POTS. I already knew at that point and that… so that was at this time last year, which is when that episode recorded. So good, we’ve been talking for an hour, and I have just brought us up to the last recorded part of the story. And so what has happened since then is that I went to see a physiatrist, to ask about my cervical stenosis and she was just like, “If you want pain management, you’re weak. And if you don’t want pain management there’s nothing else w
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