Alex Haagaard talks narcolepsy, mast cells, and inclusive design.
TranscriptBrianne: I’m Brianne Benness, and this is No End In Sight, a podcast about life with chronic illness.
Drew: Hey, this is associate producer Drew Maar. Before we get started, here’s a quick reminder that you can find No End In Sight on patreon, which is a really simple way for listeners to subscribe to support the show financially on a monthly basis. So if you’ve been enjoying the podcast and you also have a couple bucks to spare, We’d be so so grateful if you’d sign up as a patron at patreon.com/noendinsight. Today we’ll be talking with Alex Haagaard about narcolepsy, mast cells, and inclusive design. A few content notes for this episode: There’s some COVID vaccine talk around 45 minutes in and lockdown comes up around 2 hours and 20 minutes in. There’s a mention of Vyvanse at around the hour mark, and a mention of cannabis around an hour and 45 minutes in. There are oblique references to suicidal ideation at around an hour 25 and an hour 35. And there’s a mildly graphic description of a bleeding time test an hour and 50 minutes in. Before we start, here’s our 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.
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Brianne: Okay. Well I like to start just by asking people, how was your health as a kid?
Alex: Oh. Oh God, that’s a complicated one. So yeah, I was a sickly little kid, and at the same time, my doctors and my parents really liked to reassure me that I was a healthy little kid. Never… never heard anyone talk about that before on the void.
Brianne: Very unusual.
Alex: Yeah, my whole health journey started when I was four, and my mum took me into urgent care, and they discovered that I had petechiae, which is like a pinprick kind of bruising that’s most normally associated with bleeding disorders. And they freaked out because for them it was like leukemia. That was their big association, and so that started me on the whole thing. And I didn’t have leukemia. I didn’t have AIDS. I didn’t have lupus. I didn’t have any of the other really scary things that they tested me for. So it eventually got sort of downgraded to idiopathic thrombocytopenic purpura and they just sort of left it there for another 20 years.
Brianne: Okay. Were you aware, at that age, that they were looking at… considering serious health stuff? Did that imprint?
Alex: It did because my mom does not handle stress or trauma well cause she’s… she’s got a lot of trauma. So yes, I was the emotional regulator for my parents. So yes, I was very aware of all of that and it was amazing. It was… it was honestly… it was weird cause I was aware, but I also don’t think it really like hit me because they ruled out the really scary stuff sort of within a span of three months. So there was sort of this period of very scary stuff, but the stuff that was most scary for me about that was the actual physical stuff that I experienced in the hospital, which we can get into cause that was a whole thing, too. And then the prospect that I had something that was like fatal sort of dissipated over the course of about three to six months. And then I was left in the position where I was still like, “I’m in pain. I’m getting sick a lot.” And they were like, “No, you’re really actually very healthy.” So it was this really weird relationship, I think in a weird way, like, because they’d ruled out that fatal stuff, that set me off on the whole relationship that I had to my health, which was not being able to tell whether I was healthy or not. Yeah.
Brianne: It’s hard cause like you say, when you’re that young, the context for so much of it is like, you can pick up the emotional cues of the people around you and interpret them however you interpret those things at that age, which is widely varied. Of course. But like, you don’t know that like, or maybe you kind of know, but you don’t know what other kids are going through instead.. If you know that they’re not going through this, you’re like, “Okay, well maybe they do have weird bruising. It’s just not as serious.” The fact that it’s not…. it’s way more binary than that, frankly like…
Alex: Yeah. So much. And it is odd too. Cause there was like a little bit of context. Six months or a year before I was going through that whole thing, another kid in my class had been diagnosed with leukemia. So I remember sort of like… I had that context. And like also as a kid I didn’t see it all that much differently. I remember the parents always being, like… talking about it and these like really sorrowful tones. And I was just like, “Oh, this is just the other kid in my class who’s sick.” And then I remember when I was like in fifth grade, there was another kid who had hemophilia. And I remember I was actually like kind of jealous of him because the grownups took him seriously, and I remember in a really fucked up way being kind of jealous of that.
Brianne: Yeah, it’s so weird. I’ve been thinking about this so much lately, and I don’t know why, because I’ve known I had POTS for a while. But I’m still thinking about like old POTS memories, and like moments when I definitely was probably presyncopal, and I’m like… in environments where kids… If anyone had had a diagnosed condition, if they had been at that level of like about to lose consciousness, somebody would have intervened because somebody would have been watching for that all the time. As opposed to being like, “Oh, I’m not ready to keep up with the group,” or whatever it is in these social situations. And you’re like, “I can tell that everyone is flagging me as disruptive.” I know there are many disability contexts where this applies, and right now I’m thinking specifically of that one, when you’re like, “Oh, I’m being weird. I look dramatic. I need to lie down.”
Alex: Oh my God. Yes.
Brianne: And people are like, “Kids… you shouldn’t need to lie down, get up.” And you’re like, “Okay. But that other kid who isn’t about to faint, but something serious is wrong with them… you recognize that they need to sit stuff out.”
Alex: Yeah.
Brianne: That’s really present for me right now.
Alex: Yeah, it’s a really weird feeling. You know, I talk a lot about how we distinguish between medically visible and medically invisible disability. And I mean, I think that foundation was laid, like as a kid, as I was seeing how differently adults responded to some of these illnesses and conditions. So there was literally this one time… I did swimming lessons. And whenever I had to have an endurance test, I’d get sick. That was like the, how you leveled out of whatever badge you were in. And they did the endurance test where you had to do like 20 or 40 laps within a certain amount of time, and I would always get sick. I’d always start wheezing. And then one time I like fully collapsed in the change room, and apparently I was like screaming about how I was dying and stuff. And like somehow not one of the adults in the change room was like, “Hey, maybe we should phone 911 or something.” I don’t know.
Brianne: Just like call a lifeguard.
Alex: They just sort of like stood around laughing, and like, eventually someone got my mom, and I like told her she had to take me to the toilet cause I was like incontinent by that point. And then I told her she had to get me into the shower and cool me off. Like I somehow knew this. I knew I needed to get cooler. And like looking back, I’m like, “Someone should have phoned an amulance. Why did no one phone an ambulance? What?”
Brianne: Like just, how did everybody interpret that scenario? I don’t know. I like, I fainted in public, more than once at this point too, and I’m just… it’s weird. It’s weird how people react, especially to like… everything that they think is going on in the circumstance and whether or not they think that you are somebody who needs help in that moment, because I feel like I’ve had both reactions.
Alex: Totally. Yeah. I’ve close to fainted once in public. And that was in high school, and this is the thing, I’ve never full on fainted, but I’ve gotten to the point where like I semi consciously laid down. Right? Like I still… I would consider that fainting because it was like, I laid down at the point where I knew if I didn’t lie down, I was going to hit my head. But like, technically I was still conscious cause I could hear things. And I remember it. This was in high school, and I was in the hall in the middle of lunch, and I sort of like crumple laid down on the floor. And I heard people stepping over me and being like, “Ooh, she’s really sick.” I mean like, “Okay. So like, could someone get a teacher maybe?”
Brianne: Yeah like, “What is the protocol for this?” God! Yeah.
Alex: Yeah. And then, I remember one time, I was like… when I lived in Toronto, I stopped doing it because I figured people were going to figure I was drunk or something. This is the other thing too. I sort of learned very quickly that people would just assume I was drunk or high or something. So like one time I was on my way to an exam, and I got overheated on the TTC cause TTC in winter… like coats and everyone, and then it gets delayed, and I had to run off the train and go lay down on the floor of the bathroom, which is just like… floor of subway bathroom is not a place you want to lie down. And I had to go to like write a three hour exam after that. It was just not great.
Brianne: You were like, “I’m covered in bathroom, and I do not want to be.”
Alex: Really don’t want to be here right now.
Brianne: Yeah. Yeah, no, definitely. Transit is the worst. Okay. I could think about that a lot more, but okay, so as a kid, you’re like going through this and you’re very… you are becoming increasingly aware of like the dynamic between your health that you’re like… Maybe you have good words for this. There’s just dissonance between what you are aware of your body doing and the way everyone else… I mean, that’s what you were just describing. There’s a huge dissonance as you’re moving through the world like, “My vision is spotty. I can’t make full sentences because there’s no…” I mean, obviously also you probably don’t know that this is why it’s happening, but, “My vision is spotty. Blood isn’t getting to my brain, and I’m trying to like move through the world like a biped and it is not happening. And everyone around me is just like, ‘ha ha good luck with that.'” And then this isn’t like an oppression Olympics thing. It’s just that like, as an experience, you’re like, “Oh, there’s distinct things going on here.” Yeah. Yeah.
Alex: Totally. Yeah. And it was also so interesting because there was this dynamic where I think because I had that experience of potentially serious sort of medical issues as a kid, there was also this interpretation that as I kept complaining about health issues and talking about the things I was experiencing, I think a lot of the adults in my life interpreted it as like anxiety born of those experiences I’d had, that I was worried… cause I remember one time they tested me… this was when I was a little bit older. I was in my teens, and they tested me again for the markers of lupus. It was the ANA test. And I remember I’d asked them, “You tested me for lupus when I was like five. Does that mean I could still develop lupus?” And they were like, “Yeah, it’s a possibility that you could still develop it at some point.” And I remember sort of talking to my parents after the fact, they were like, “Oh, you’re still anxious about getting lupus?” I’m like, “No, I’m just curious.” But there was this assumption that I was sort of like experiencing anxiety, and that what they were trying to do was reassure me. And I was like, “No, I literally just want answers. Like, why does my leg feel like it’s popping when I go up the stairs?”
Brianne: Yeah. Yeah. It’s like, other people are trying to answer the question, “Will something serious happen?” And you’re actually asking the question, “Is this thing that’s happening now serious?”
Alex: Yes exactly.
Brianne: Yeah. And they’re like, “No, no, don’t worry. Like, you don’t need to worry about your health future. That’s in the future, you know, live in the now.” And you’re like, “No, I’m talking about the now. That’s what I’m talking about.” And do you feel like… something that I think is really interesting is how that can affect different people. Do you feel like you yourself were pretty confident that you were having physical sensations or were you starting to be like, Huh? Do I just interpret my body in a very,” I don’t know the right word here, like, “concerned way?”
Alex: I would say I was like pretty confident in how I was interpreting my body, like right up until my late teens, like in undergrad, and then… it’s like complicated because I was always the weirdo freak outsider. I didn’t have friends. I was also autistic and undiagnosed with that too. I literally did not have a friend group that stuck around for more than like maybe a year at a time, at which point they’d sort of get sick of me and/or realize they could get more popular by hating me. I was just sort of in my own bubble, and like, there was something to that. And then I got to university and I made friends for the first time, but it was also very… like, I was masking. I was making friends through masking, and they’d tease me, in a good natured way, the way that friends do about like, “Oh, you’re such a hypochondriac.” And like, because they were now my friends, I started to like internalize that more. I was also in pre-med. And so I was getting exposed to that culture of, “Patients always think there’s something wrong with them.” So there was that. And then I also started dating my ex partner who was also a pre-med. We were in the same program, and who came from a family of doctors who had very specific ideas about patients and illness and what those things mean. And all of those sort of through my late teens and early twenties, I started to shift and stop believing myself, and lost touch with what I was feeling in my body. Even as… that was exactly what my illness was sort of ramping up.
Brianne: Yeah. I also think… I know at least for me, like, one thing about moving to a new environment at that age, is like, there’s so much distracting junk going on. There’s so many different things influencing your body. It’s easy to just be like, “Oh cool. This new environment feels different. I have a different bed. I have a different bedtime,” so many factors that are like, “Cool. This is what it feels to be here now.”
Alex: When people ask me when my narcolepsy started, I straight up can’t answer because for such a long time I thought it was just, “Oh yeah, everyone’s tired in school, and everyone has a fucked up sleep cycle.” It wasn’t until I was literally sleeping like 14 or 16 plus hours a day and like, missing meetings because I’d fully slept through my alarm that I was like, “Oh, something is like definitively wrong here.” There’s like maybe two or three years, maybe even four years before that, where I don’t know to what extent that was like, “My brain was starting to have issues literally,” or it was just like, “I’m someone who deals with fatigue and was also in like a very sleep disordered environment.”
Brianne: Yeah. Yeah. I find it very hard to look back at school. I went to architecture school, which is… I did not know, but like, notoriously basically abusive as an environment. It has a huge hazing culture. And as a profession, it has a huge hazing culture. And it was just like, “Oh, this is really difficult.” And everyone around me would be like, during finals, right before reviews in studio, would be like, “I haven’t slept in five days.” And I’d be like, “I slept for five hours last night, and I’m in so much pain. What are you talking about?” They’d be like, “Oh, ha ha. You can’t stay up all night. What’s that about?” Like, I think I was the youngest person in my year in my program just because my birthday’s at the end of December. You know, a couple people were like a few years older, like, “What do you mean, you can’t stay up for three days? Like you must just be flawed.” And you’re like, “Yeah, my desire to succeed in school is the problem here. That’s right.” So at some point, were you like, “Huh…” or did you not have a choice?
Alex: So basically I had an existential crisis in my final year of undergrad, but I didn’t realize exactly why I was having it. I was also fully determined to go to med school, and I applied. I got in, and I was like, “I can’t do this.” I was like… just freaking out. And so I decided to apply to design school instead. I actually, I applied to RISD for their undergrad in… can’t remember which program. I applied there. I was like, “You know what? They’re like the top… if I can get in, that’s like…” I was like, “I’m proving to myself that I can do this. This is a valid choice for me.” And I did get in, and then I went to the bank. I was like, “Hey, can I have $200,000 to go to a private art school in the States?” And they were like, “No.”
Brianne: Yeah, “Sorry.”
Alex: They were like, “I’ve never heard of school costing that much.” I was like, “Okay.” This is like in North Durham, like rural Ontario.
Brianne: And Ontario in general, I mean, graduate degrees in Ontario… graduate degrees at U of T can be pretty expensive, but like undergrad in Ontario…
Alex: Not like, cost of a house expensive.
Brianne: Yeah. It’s never that high. Yeah.
Alex: Not for an art degree. They’re like, “You want to spend it on what?”
Brianne: You’re like, “Listen, it’s a good school, and that matters.” Which it does, but also one thing that I’ve learned is that chronic illness really interferes with your ability to maximize a network.
Alex: I… in hindsight, I spent a really long time feeling guilty for not, but when I was sort of living in poverty as like a designer who couldn’t get my career off the ground, I spent so much time feeling guilty for not going to med school, but also in hindsight, I’m like, “I would have been $200,000 in debt and not able to do residencies.” I would not have made it through. I am so, so glad I had that existential crisis.
Brianne: Yeah, no, I 100% hear you. And it’s weird when you’re still undiagnosed, and you’re like, ” Some parts of school are hard, but it doesn’t seem to be the parts of school that other people struggle with. So like, how do I anticipate… Is this grad program a good choice? Like how could I possibly make that decision? Because I don’t know what my body needs or why it seems to be different than other people.” Yeah.
Alex: I also didn’t love my master’s program. There was a lot of ableism. My thesis was on design for healthcare, and it was not nearly as critical enough of the healthcare knowledge practices that I now spend all my time critiquing, and it could have been so good. And I regret that so much, but the one thing it did give me was like critical theory and the language to realize why I was so deeply uncomfortable within my undergrad, which was… the ableism of the culture and the ways of knowing and the ways in which they erased patient knowledge like systematically. And so it gave me that, and I finally had the language to be like, “Oh, this is why I like, could not survive in medicine.’ And also… it’s really weird cause I still love medicine. It’s still like my favorite topic, but I like it as an observer and a critic, and I cannot be in that space. So.
Brianne: Yeah. And like, it’s so complicated how, like, there’s the difference between medicine and healthcare. A really big difference. And it’s hard to be like, “How could medicine be practiced within our community in a way that would be generative?” And then you’re like, can that happen within a healthcare system?” And then you’re like, “I don’t…” Like, “Does not compute. These are different priorities. Uh oh.” Yeah. And so did you, did you go straight through just like timeline wise? At this point, you’d kind of been like, “I am a full time operating human.”
Alex: Yeah. So I took one year between my undergrad and my grad, cause I had decided at that point to pivot into design, but obviously I needed to apply somewhere that I could actually afford to go. So I spent like a year working in retail in a yuppie dog store near High Park in Toronto. It was on Bloor. It was literally like right beside the park. So it was just big houses, lots of very well taken care of dogs with collars that cost more than my rent.
Brianne: Yeah. When I first moved to Toronto, I actually moved into one of the, like very tall high-rises near High Park, which are not expensive, but are like… it’s a weird land use thing, but that was my first neighborhood. And I was like, “This is the weirdest neighborhood ever.”
Alex: I love like, honestly, those high rises are so nice, and the park was so gorgeous. And then yeah, then there was just like the huge, huge houses and yeah, literally one time we had a dog come in that was wearing like an Hermès collar. It was like, “Okay. My rent is $500, and I can barely afford that, but sure. Fine. That’s great.”
Brianne: Yeah, yeah, yeah, Toronto’s weird. Separately. Yeah. Cause I lived like North of Bloor, but like, across from the park. And so I was just like,”Aha! I can see your beautiful neighborhood from the edge of my balcony.” And I was good. That’s just my important fact to add to this designer dogs in Toronto discourse. Okay. Yeah. And you’d been having an existential crisis, you were thinking more about design. Do you feel like… were you consciously thinking about what was going on with your body at that point? Or was that still very much like… maybe you’re aware of it in retrospect, but it wasn’t… you weren’t thinking those words at the time?
Alex: I was sort of repressing it until probably like the end of my first year of my master’s. I had sort of a moment of clarity when… I was also doing a research assistantship, and like, my boss was actually like really cool, but the other students, I was doing the research assistantship with got furious with me because I had flaked out, quote unquote on a morning meeting because I slept through my alarm for three hours and I was like, “Okay, this is not right.” So I like went to the campus clinic. And I was like, “I think I need a referral to someone.” And it was at that point they referred me to a sleep specialist, and I sort of started going through the process of getting the sleep disorder diagnosed. It was with the sleep disorder because it was so overwhelming. It was not something… I could neither ignore it. And I also could not control it, no matter how hard I tried. So it was at that point, I started realizing like, “No, there is something deeply wrong here.”
Brianne: Yeah.
Alex: Yeah.
Brianne: And Toronto… I mean, this is loaded for a variety of reasons, but Toronto is a good place to be all things considered, if you have a medical issue. Depending on what’s going on with your body, one of the best places in Canada, if not the best. Plus it’s covered.
Alex: Yes. That is helpful. Anyway, so yeah, I got referred to the sleep clinic and honestly, the sleep clinic was… it was not good. They did the first sleep test, and they diagnosed me with idiopathic hypersomnia, which that doctor told me that it meant what it sounds like. Essentially, “You sleep a lot, and we don’t know why.” They’d ruled out narcolepsy somehow. I don’t know how they managed that, but… they’d ruled out sleep apnea. They still insisted on trying me on a C-PAP machine for a month, despite the fact that I had lower than average apneic events, which was wild, but that is also sort of the health care cycle. Like, they have to rule out the common thing cause that’s the thing they can get funded for. They can get funded for prescribing you the C-PAP. They can get that partially covered, whereas an off-label drug, a little bit dicier sometimes.
Brianne: Yeah. Like, no mechanism.
Alex: Yeah. And so like, I tried the C-PAP. I literally could not sleep with C-PAP, and I think for sensory reasons, because again, undiagnosed autism. I could not sleep with it. And I remember like, they asked me to keep a journal and they yelled at me. I had to come back and do the next sleep test to test how it was working for me, and they yelled at me for how little I used it. And I was like, “Look, I’m struggling to stay conscious already, and I cannot sleep with it.” And they, like, got so angry, and they lectured me about it. And then they had me do the sleep test, and the next morning they’re like, “Oh yeah, you didn’t enter deep sleep at all.” And I’m like, “No shit, Sherlock. I told you this.”
Brianne: Yeah, like, “This is what we were talking about before.”
Alex: “This is why I was not using it this month.” So it was obviously not sleep apnea either. So idiopathic hypersomnia, they prescribed me Modafinil. It was not working well for me. So they cycled through a couple other drugs, and they were not working. And then after about like four or six months, that doctor told me I just wasn’t trying hard enough to control my sleep cycle, and it was probably also because of my depression. And I found out a few years later that he’d written in my file that I’d agreed to continue working through this with my therapist. I didn’t have a therapist. So like not sure what…
Brianne: When did this conversation happen?
Alex: Yeah. So I sort of gave up again then for a few years. At that point I knew there was something wrong, but I also just… it was so frustrating, and that was sort of where I had gotten with my chronic pain and my bleeding stuff around university. I sort of gave up cause through high school, I kept being like, “Okay, but so why am I bleeding so much?” I was still trying to find answers. I was doing my baby version of my research, where I was like, “Hey, have we tested me for this?” And I sort of gave up once I hit university, cause like I can’t deal with this and it’s too much. And then I sort of started repressing it. And then the same thing happened with the sleep thing, which was like, I realized there was something wrong, but I also didn’t feel like there was any way for me to get help, and it was too stressful and awful. So I just sort of managed it as best as I could, which was by sleeping on again, the bath… I have a really good relationship with bathroom floors, sleeping on the bathroom floor at work during my lunch break and sleeping for literally 23 hours on my days off. And then just like waking up long enough to go down the street and get McDonald’s.
Brianne: Yeah. You’re like, “I am thriving.”
Alex: Yeah. Doing well.
Brianne: Yeah. And also, I think it’s worth noting compared to now is that certainly in high school and then kind of in university, there was no social media and there was certainly like… The modern internet didn’t exist. I personally was using Live and DeadJournal in high school, but I was not like, “Hello, where are the scientific med communities?” which very well, may have existed, but I was not looking for them at like 15.
Alex: It’s so funny you say that because that is literally… that is the moment when I started actively identifying as disabled, and like, I switched into chronically ill, fighting for answers mode. I think I was just Googling “idiopathic hypersomnia” to try and learn more, like, see if there were any other options, and I came across this Medium article that was profiling someone who had it. And who was one of these sort of first patient activists with idiopathic hypersomnia and talking about how there was research going on at… blanking on the name of the school. Emory! That’s the one. Okay. It turned out at Emory, they were doing research, and they’d found that some people with IH have this novel peptide in their cerebral spinal fluid that essentially acts like Valium. Like, it literally works like they’re under constant twilight sedation, and it was talking about this one patient who they’d tried administering a drug that is normally used to bring people out of anesthesia, post OR, and it had been like miraculous for him. And it wasn’t perfect because I think he was able to take it for like four weeks on and then would have to do a two week med holiday. Otherwise it would lose efficacy, but he was talking about how he was able to be conscious sometimes now. He was able to exercise again, and I was like… it wasn’t even so much that there was a hope of a treatment, but it was like, “Okay, so there is something real.” It’s not just, “You’re sleeping a lot, and we don’t know why it is.” It’s not just, “You’re depressed.” Like, it was, “Okay, there’s something real and physical going on here.” And the article mentioned that there was a Facebook group for other people with idiopathic hypersomnia, and that… it like started the whole thing. And I sort of started out… it was like very much a chronic illness only, not like disability-oriented space. But after reading that article, I started identifying myself as invisibly disabled to friends and family, and pushing back when they’d be like, “Hey, maybe you should just exercise.” Or like when my classmates were like, “Hey, have you tried this algae supplement?” Cause I was in art school, and of course everyone was like, “Have you tried gluten-free? Have you tried like drinking algae every morning? Have you tried like going to Pilates?”
Brianne: Yeah. “There’s a lot you can do. Is your diet raw?”
Alex: Hot yoga! That sounds perfect for me! Heat and bending your body in odd ways.
Brianne: I’ve never been to a hot yoga class, but like there’s a significant time in my life when I very likely could have. And I now feel very grateful that I did not do that because it would have been a very bad idea.
Alex: I remember like reading about that when it became a trend and being like, “Why is everyone not passing out in that?” And like that also probably should have been a hint.
Brianne: Yeah.
Alex: Just the idea of exercising in the heat. I’m like, “Why are people not actively dying when they do this?”
Brianne: Yeah. Yeah. “This is relaxing for you. Hmm… I have a very narrow band of comfortable temperatures, and I suspect this will be outside of it.” Yeah.
Alex: But yeah, so I joined that group and I started just posting and like being somewhat active there. And that was like my first exposure to just like chronic patient communities and the fact that this thing that I’d been told was literally psychosomatic was not and could not be. So in the three years after my masters, I basically just worked at the dog store and like, did short-term little research contracts? Cause this is the thing too, if you’re trying to make it as an artist or designer, so much of that is about like building your portfolio with spec work or work that you can submit to shows and like networking and like inviting the fancy curators into your studio for a studio visit. I think the students who got the most of our program were the ones who were like producing stuff and inviting the people who were connected to the department in for like critiques and making connections to get invited to gallery shows. And I was just there like, sleeping on the couch that I’d hauled up from the basement and put in my studio.
Brianne: Yeah.
Alex: Just sleeping in the studio. And so, yeah, I was like struggling to build any kind of career because I couldn’t do any of those things that you need to, because no one will just hire you off of a degree in that field. And working, working retail, sleeping in the bathroom. And then I started tutoring students in Forest Hill, which is like the other rich area, so for very good money for about six months. That was like, the most financially comfortable period of my career. And then I got offered a job in the UK for a research contract, and I jumped at it because I’d sort of always wanted to go see the UK and like travel a bit. And it also felt like finally building towards something more permanent in my career. I hadn’t really thought about what immigrating means as someone who takes like restricted class medications. So like, I got there and they’re like, “No, we can’t prescribe you this. We have to rediagnose you within the system.” And I was like, “Okay. So can you refer me to a sleep doctor?” And like, “Well, we can put you on the list, but it’s a three-year wait list.” My contract was 12 months. So my first six months, there were like fighting to try and access someone eventually. Thankfully, I had parents who could afford to send me to a private clinic, and six to eight months in, I got in to see that private clinic. I ended up essentially disappearing from work for a week, like AWOL cause I… I’d finally went out of my meds and like, I could not even muster the movement to call them, and be like, “Hey, I can’t come in.”
Brianne: Yeah.
Alex: And so my mother actually had to come and care for me because I was like… I just didn’t call work. I didn’t go to the grocery… I… I had a block of marzipan in my cupboard. That was what I ate for a week.
Brianne: And it’s so hard to explain. There aren’t words for the feeling of it. I definitely don’t have them. I mean, I experience it too, to be clear, but like, I hear people describing this state of like, basically like at home, not able to feed myself. We barely have a language for it because culturally and contextually that only could be a mental health problem.
Alex: Yeah, totally.
Brianne: Either you have an injury, so like, you’re in a full body cast, or you’re so depressed that you can’t feed yourself. And I’m not maligning depression, that is a real thing that can happen, especially as executive function breaks down. But like, that’s not the only thing happening here. And also when it’s happening to you and you’re like, “Yeah, I’m tired, but I should be able to just turn it on, right? Why isn’t that happening?”
Alex: Yeah. That’s it’s exactly… yeah. It’s exactly it. You know, saying you can’t do something, it’s either like mechanical, as you said, like you’ve broken your leg or you’re paralyzed, or it’s psychological and there’s no space for like, “My brain literally won’t send the signals to like…” Yeah, there’s no language. There’s no sort of conception of what can’t means when it’s not just like a mechanical issue. It’s like, “Oh, you don’t want to, and you can’t will yourself to.” But that’s… that’s not even what it was. It was literally like sleep doesn’t work for your body. So essentially you’re in a constant state of sleep deprivation and like, you know, you look at like, “What are the stages of sleep deprivation like in a normal brain?” And I was operating around, like, if I’ve been deprived of sleep for like 72 hours straight. That was like my baseline. So I’d look out the window, and I’d see trees walking around. I was actually psychotic and not in like a colloquial way.
Brianne: Yeah. Not a euphemism.
Alex: Sleep deprived psychosis for like several years.
Brianne: Yeah.
Alex: It was cool in a way, like in a weird way, I kind of miss looking out the window and being like, “Oh, there’s an ent.”
Brianne: My dream world!
Alex: Literally, and it was like really cool in some ways. I think my brain was never more creative than at that point, and I had so many creative ideas that I’ve never done anything with because I couldn’t do anything, also, other than like lie there and think dreamily. And yeah. Like, I couldn’t bring myself the motivation or the energy to go shopping, but also even if I had been able to, I couldn’t do it safely cause by the time my mom got there… I’d sometimes go out with her grocery shopping, like, just to sort of get out and get fresh air. And then like, one time I remember we were waiting at a stop light and a car honked, and I just automatically started walking into the road cause it’s just like… sensory thing. Like, I was literally sleepwalking, even though my eyes were open, and my mom had to yank me back from the intersection. I could not do anything safely. I couldn’t turn the stove on cause I’d forget cause it was effectively like you wouldn’t sleep cook. That’s not safe. Everything I would try to do was effectively like I was doing it in my sleep.
Brianne: Your short term memory is not actually like remembering the chain of tasks that you’ve been doing, so that you can be like, “Okay, what is next based on what has happened before?” Nothing has happened before.
Alex: The short-term memory thing is a whole other thing cause like during this period of a few years, sort of before I moved to the UK and it got like really noticeably bad to everyone, like I would lose things constantly. And I remember like, my dad would helpfully be like, “Well, you just have to put your keys in the same spot every time you come in.” And I’m like, “You’re not understanding. I need to then remember what that spot is, and I need to actually remember to do it. From the time I get into the door… I can’t do that. Like I have no…”
Brianne: “My habit-building mechanisms are not active.”
Alex: Yeah, I’m not conscious of anything.
Brianne: Yeah. God, bodies. Can I also take a quick diversion, just because you kind of mentioned UK healthcare and Canadian healthcare as you were transitioning in between them? So having lived in both, what was that like? I think because yeah, people, in every country, I will say, like… now I’ve interviewed people the most from Canada, the US and the UK, and I’ve lived in Canada and the US, so I know those two systems better. These three systems are all very different, and most people in those countries know very little about their own system, and also their ideas about the other systems are like usually flat out wrong.
Alex: Yeah. I think maybe the NHS used to be different the got it. I will preface it with that.
Brianne: Before austerity.
Alex: Do you know the show, The Prisoner, from the 1960s or seventies with like Patrick McGoohan? Okay. So he’s like an ex MI6 agent, and he like got on the wrong side of the government for some reason. And they imprison him in this like surreal village in North Wales, and he keeps trying to escape and like he can’t, and he keeps getting caught. I felt like I was in The Prisoner, trying to navigate that system. No matter what you did. They had an answer for you, and it was not… no matter what you did, you could not make any progress. And it felt literally surreal, and that also possibly was partly due to the fact that my brain was like in sleep deprivation mode. Nothing felt real, but it was just everything I tried. When I was trying to get access to the meds initially, and then trying to get a referral, first, they just sort of wouldn’t give me an answer. They’d say, “Okay, well we’ll sort that out.” And then like two months go by, and I’d call them back, and they’d be like, “Oh no, nothing yet.” And so finally it started getting urgent, and I was arguing with them, and I was saying like, “I need these meds to stay conscious.” And so I was asking, “Can I get an urgent referral to the neurologist?” And they’re like, “Well, no urgent referrals are only for things that are serious.” was like, “Right. I literally can’t stay conscious without these. Like, I feel like that’s serious.”
Brianne: ” How do you legally define serious?” is actually a really great question for every healthcare system, frankly, but in this moment…
Alex: Definitely. It was this utterly impassive response to absolutely everything I brought to them. Then I finally did actually get in to see… they did like a semi-urgent referral, which could be at the clinician’s discretion. And so I got in to see him, and he did agree to prescribe me the Modafinil, but was sort of disinterested in any of the other cognitive, physical things I was describing because at that point, my mast cell symptoms for asserting themselves. So he did agree to write me the note for the Modafinil, and two weeks later, my GP surgery still had not received it. So we kept trying to phone back to the neurologist clinic, and they weren’t answering. And then several days later, we finally heard back from him. He’d fallen off his horse literally the day after my appointment, injured himself, and was on indefinite medical leave, and had not yet transcribed the note for my appointment.
Brianne: I have a lot of reactions, and I just can’t put any of them into a single sentence.
Alex: In hindsight, it’s so hilarious cause that is the most British middle-class bullshit I’ve ever heard in my life. I’m sitting here like, “I cannot feed myself or go to work, and you fell off your horse.”
Brianne: And like, you deserve great medical care, but also the system needs to have like a little bit of resilience for when shit like this happens, in addition to how absurd it is as an activity.
Alex: And it was just like utterly impassive. And so my mother argued with that clinic for like two or three days, and they finally agreed… the receptionist or nurse or admin finally agreed to type out the note that he’d written during my thing to send to the GP. And exactly it’s like…
Brianne: That should happen automatically.
Alex: When it breaks down that easily, like… this is an issue. There was always this attitude that we were being the unreasonable Americans. It was always like the slight, like, “You’re being overly emotional about this,” and like this stiff upper lip. I feel so much for other chronically ill people there because the stiff upper lip thing is real. It is real, and it is not good when you’re chronically ill. And then I was able to access the private system. It was not easy. My parents went into lot of debt for that, but that was a nice sleep clinic. And they diagnosed me finally correctly with narcolepsy.
Brianne: What are the diagnostic criteria for narcolepsy?
Alex: You do an overnight sleep test, and basically the overnight sleep test is to rule out any other issues with your sleep, like apnea or restless leg, that could be disrupting your sleep and therefore causing you to be tired during the day. And they also do just look at your sleep architecture to see if there’s any indicative abnormalities. I had like higher than normal sleep efficiency, obviously. I had an oddly elevated level of N3, which deep sleep, which no one has ever been able to explain or seemed particularly interested in, but that… I remain interested in why that was. I suspect it was because… so elevated N3 sleep usually happens in what’s called recovery sleep, so if a normal person has been sleep deprived, their recovery sleep after that will have the same kind of percentage of N3 that I have. So essentially that tells me that my body was functioning as though it was sleep deprived, but no one’s ever really talked about that in literature on narcolepsy, and then they do a daytime series of nap tests where… there are a few different types of nap tests. So the diagnostic one is multiple sleep latency test. What happens is they leave the lights on, or they only dim them the very slightly, and they basically just have you rest back on the bed, and they’re like, “Try to stay awake for as long as you can, but like, don’t pinch yourself. Don’t move, just lie there, but like, don’t actively try to fall asleep.”
Brianne: Keep your brain on.
Alex: Exactly. And they see how quickly you fall asleep. So you get up to five trials throughout the day space at even intervals, and if you fall asleep within 20 minutes within at least three of them, that’s considered a positive MSLT.
Brianne: Okay.
Alex: So then you’ve definitely got something wrong.
Brianne: Okay. It is not expected for you to fall asleep that fast under those conditions.
Alex: Exactly. Anything less than sort of falling asleep within 20 minutes is considered pathological, if you do that routinely, and then they also check what stage of sleep you hit, and that’s what distinguishes between idiopathic hypersomnia and narcolepsy. So narcolepsy is characterized by hitting REM very quickly, rapid eye movement sleep. And so if you… I think it’s within 10 minutes, if you also on at least three of the tests hit REM within 10 minutes, possibly 15, then that’s considered positive for narcolepsy. If not, it’s idiopathic hypersomnia.
Brianne: Okay.
Alex: I started sleeping within an average of 30 seconds, and I hit REM within an average of the minute.
Brianne: Yeah, that’s fast.
Alex: So it was narcolepsy. Yup.
Brianne: You were like, “Okay. Yeah.” So did you know very much about narcolepsy at that point? Because you’d been in IH groups, was there like kind of some cross discussion or misdiagnosis discussion? How much awareness did you have at that time?
Alex: I had a decent amount of awareness, and it was exactly that. I had joined a narcolepsy group just because there is a lot of crosstalk too, between issues in accessing care. Narcolepsy is marginally easier to access care for just because there are a couple of on-label treatments, whereas for IH, there is absolutely nothing. But in terms of like the average sleep specialist knowing, they know next to nothing about either. Like, the average sleep specialist, they’re an obstructive apnea specialist because they also don’t know anything about central apnea.
Brianne: Yeah. They’re optimized for like identifying and treating one problem, which is a systemic thing.
Alex: And notably the common and also mechanical problem. We’re back to the mechanical. We are good at treating mechanical issues.
Brianne: I want to also just flag this with a fun fact that I know from another interview. So people might know this from having listening, but somebody who I interviewed Randy, who has EDS, who did have apnea also, she couldn’t wear the C-PAP machine because of her skin. So the C-PAP wouldn’t keep a seal around her EDS skin. So she was like trying to use a C-PAP, and I forget now the details. It’s in the interview, but it was like, maybe at the beginning, she’d be like, “Oh, this is great.” And like, by the end of the night, it would just not be on her. Like it wouldn’t stay. And she ended up having… I had never heard of this surgery, but they like put a little tube into your airway, so it can’t be obstructed. And she was like, “For me, that worked.” But like, it shouldn’t be this hard, even when it is apnea because EDS.
Alex: Yeah. That’s the thing, like, even when you’ve got the common thing, unless it’s the textbook version of the common thing, it’s… yeah. So I did know, and it parallels to a lot of like what we’ve seen and talked about with hypermobility because one of the distinguishing things with narcolepsy is also what’s called cataplexy. So there’s narcolepsy with cataplexy and narcolepsy without cataplexy. And so cataplexy is sudden episodes of muscle weakness. And the thing is that in all of the literature, that’s described as like, you collapse, and it’s usually in response to strong emotion. So it can look like a seizure often, and it can be really dangerous cause you can hit your head very badly. And that’s the textbook version of cataplexy. So I didn’t think I had cataplexy. I do have cataplexy. It turns out that the whole thing where I would like accidentally dump my, like plate of salad or my coffee all over my chest or like I couldn’t keep my head up or I couldn’t keep my eyes focused. That’s cataplexy, but it’s only ever described as the full drop. So the guy that I saw at the private clinic in London is one of the foremost sort of experts on narcolepsy in the UK. And he immediately recognized that it was cataplexy. He’s like, “No, you have textbook narcolepsy with cataplexy.” And I actually remember too, like I started laughing when he told me that, and he was like, “Why are you so happy about this?” I’m like, “I have something that’s physical and like, named.” I remember I was just like laughing with relief. It was so weird. It finally felt like having a bit of an answer, but I was still… he prescribed me Modafinil again. Doctors are way too positive about Modafinil.
Brianne: How is it supposed to and/or thought to work?
Alex: It got a lot of hype, like around 10 years ago, I guess because they came out with a study that found it was really effective at improving wakefulness, and I remember the big thing that they hyped it about was that it has minimal to no side effects. That may be true for healthy people who take it for like, nootropic reasons, like, you know, the mental capacity improvements. It may have no side effects for them. It made me hypomanic. It made my tachycardia worse. It made my mast cell symptoms worse. It made my thermodysregulation worse. It made me have muscle spasms and horrible muscle cramps, to the point that I couldn’t unbend by leg for three days and I had to use a crutch cause I literally just couldn’t unbend my leg. They don’t know exactly how it works. They really love to emphasize that it is not a stimulant. It’s a wakefulness promoting agent. They don’t know exactly how it works, and at least one of the pathways by which they think it works is the same way that stimulants work. So it’s all a lot of rhetoric.
Brianne: Yeah, yeah. It’s like a lot of intentionally misleading technical language.
Alex: Yeah. It’s thought to work sort of through dopaminergic pathways. It’s also thought to have some serotonergic action, which in hindsight, I realize is probably why I was having so many side effects because A, I was also on Prozac at the time because shockingly, I was dealing with a little bit of depression by then, but also I also do not tolerate serotnergic medications well at all because, which I did not know at the time, my mast cell disorder… one of the things mast cells release is serotonin. And once I learned that, it explained why I’ve always had symptoms of mild serotonin syndrome whenever I’ve gone on a serotonergic med. So I was basically experiencing like mild to moderate serotonin syndrome on Modafinil for months.
Brianne: Yeah, Yeah. And with no context for all of these changes, right?
Alex: And like the psych side effects were scary. My mum was like, “Your personality and your whole affect changed on a dime when it kicked in.” It was wild.
Brianne: Distinct. Yeah. It’s so hard in general, like, med side effects… I mean, this episode will come out later than right now, so the discussion might have moved on. But at this exact moment when we are recording in early December, COVID vaccines are like a hot topic. And so I feel like this exact thing that you’re talking about about like, “Yeah, this drug is like really good for a lot of people, and I had every single system impacted.” And it’s like, “Oh, right. We don’t have good side effects data on anything.”
Alex: I feel so deeply nervous about the COVID vaccine. I’m not even talking about on Twitter cause I do not want to deal with what my mentions will look like if I do, but I don’t know if you know about this, but one of the H1N1 vaccines in 2009 is thought to have caused narcolepsy in a lot of people. I don’t think it did in me in hindsight. I thought for a while it might have because my symptoms started getting a lot worse. It’s all complicated too because my mast cell symptoms started getting so much worse. I did get swine flu. I also got the vaccine. Really lucky. I literally was probably pre-symptomatic when I got the vaccine, and then about two days later, I came out with full blown swine flu. And it was in the months after that, that my mast cell symptoms started getting unignorably bad, and it was over the following five to six years that it just progressively got worse and worse and worse.
Brianne: We jumped because of me talking about vaccines, but time-wise did much happen between like, “Aha! It is narcolepsy.” And then like, “I’m living my sort of regular life.” And then like, “Now I have swine flu.”
Alex: So actually the narcolepsy, I found out well after the swine flu.
Brianne: Oh yeah. You were talking about it for that reason. Yeah.
Alex: The swine flu was in first semester of my last year in undergrad.
Brianne: Okay. So yeah. And then you took a year off for your, “Catching up, PS…” Yeah. Okay. Got it. Yes. You did say that, but I did not timeline it properly.
Alex: Yeah. So this is the thing, too: for several years there, the sleep just overwhelmed everything else. I didn’t even notice the chronic pain. It was just in the background. So anyway, I got swine flu, and it made my illness so much worse. So that has been a thing that I’ve been very aware of through this whole COVID thing, but there’s also the fact that so many people… and this, it predominantly happened in the UK, so it was a discourse that I was seeing a lot of while I was in the UK. There are quite a few people who are thought to have gotten narcolepsy as a result of this one swine flu vaccine from this one manufacturer. And so like, on the one hand I’m thinking about COVID like, “I really don’t need my baseline to get any worse.” The prospect of it triggering ME/CFS or mast cell activation syndrome in people is huge. And then I’m also like, “I can’t feel entirely okay with this vaccine.” I’m going to get it eventually. I’m probably going to wait a few months until again, the whisper networks of chronically ill people because I’ve had so many experiences where I’ve had terrifying side effects that I was told there was no way were side effects I was experiencing
Brianne: Yeah. And to be super clear because I know that you know this, but like this isn’t about like vaccine conspiracy. This is literally, like, the easiest example that I can give for context, for anyone listening who isn’t in this conversation, is that like the flu vaccine has… not has egg in it… is technical language, technical language, egg is involved, and so they make an egg-free flu vaccine because egg is such a common allergen, but egg is a common trigger or like one of the proteins in eggs or whatever it is, and so a lot of people who don’t know that they have a mast cell problem or who have like… are having an unidentified mast cell flare because of a viral illness infection may have really serious or like, longer or unexpected mast cell side effects that aren’t being labeled that way by the patient, that aren’t being labeled that way by the doctor, that aren’t being labeled that way by the pharmaceutical company, because it’s just not… saying that it’s not well understood enough is inaccurate, but it’s not distributed well enough would be a more accurate way to say it. And so it’s like, there’s so many conversations about the vaccine coming out, and there’s one like, “They’re not telling us about the side effects. They’re lying. They’ve done it too fast.” And we’re like, “Oh no, no. I believe that the process that they do has been done properly. what you don’t know is that we then have to see what our community experience is because they’re not targeting tests for us. They’re just not.”
Alex: Exactly. And this is also the thing, people talk about evidence-based medicine, and the whole thing with evidence-based medicine is it has the hierarchy of quality of evidence. And the most high quality evidence is the large scale, double-blind, randomized control trial. People say, “The plural of anecdote is not data,” which is, first of all, a misquote, and I can get pedantic. I can get so pedantic about that, but they forget there’s also a thing called the ecological fallacy, which is that large-scale statistics are never capable of predicting an individual outcome. That’s literally not what they’re meant for. They’re meant for population level trends, and I don’t know how so many scientists completely ignore this. So what happens too is when you’re experiencing a side effect of something and you’ve got a relatively rare or poorly understood or poorly recognized condition, and you’re maybe one of the only patients that your particular doctor sees with that condition, you go in and you say, “I’m experiencing the side effect.” And they say, “Well, I’ve never had anyone else tell me about that, and it’s not anywhere in the literature.” So they ignore it. They never send it to the manufacturer. They never write it up in a journal, and so it’s never anywhere else. And so then the next person goes to their clinician who also only has like maybe three or four other patients. And they’re like, “Well, I’ve never heard of that happening before.”
Brianne: Yeah.
Alex
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