Alex Haagaard talks narcolepsy, mast cells, and inclusive design.
Brianne: 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.
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.”
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 HermÃ¨s 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: 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.
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.
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.”
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.
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.
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.
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.”
Alex: And then meanwhile, you get into the Facebook group with all the people with your condition, you see like 20 to 30% of the people in the group are being like, “Hey, anyone else experienced this?” And like, by the standards of what’s considered a common side effect, within that subgroup of patients, it is a very common side effect, but because those patients are so uncommon within each of their clinicians practices, they never get funneled into the literature.
Brianne: Yeah. And with stuff like vaccines, I know in the US there are like, numbers that you can call to report side effects, to report adverse events, which is great. But it also, I think, frankly, falls into the same hole, which is that if you’re someone who’s had weird reactions to every single thing in your life, and you’ve been told your entire life that you should ignore those weird reactions, you’re not going to be like, “This is the one that I should report because they’re going to take me seriously this time.” You’re going to be like, “Why am I so cursed?” And then move on with your life.
Alex: We’re jumping all over the place, but this is also the thing that I observed when I was in those initial Facebook groups. They’re so individualized, and this was what ultimately led me to sort of… moving towards the disability community once I sort of found out about it on Twitter, was that everyone was asking like, “Why am I so cursed? Why can I not find a doctor to take me seriously?” And I was like, “This is not a you problem. This is a systemic problem.”
Brianne: It’s weird when couple of people are cursed. It’s very weird when there are enough thousands of people in orbit who this isn’t a curse anymore. Yeah. This is still all over the place, and it applies to a lot things, but it definitely applies to chronic illness. As soon as you start talking about it, and then you talk to a couple of people, and you’re like, “Oh, anecdotally, I’m starting to realize that some of these experiences are really typical.” And so you start talking about your typical experiences, and then you find like… that ring keeps expanding of people who are like, “Oh, I have that. Is that typical for you?” And then they see the rest of the ring and they’re like, “Oh shit.” Social media is doing this in so many places for so many experiences and`it’s incredible. And also very sad.
Alex: I mean, I think it’s part of the erasure that happens too, because the whole thing is that, you know, you spend your entire life being told, “This is weird. I’ve never heard of this before. This is only you.” And so of course you learn to think about it in terms of like, “Why am I so cursed?” These individual terms. So it’s a complete shift in perspective when you start realizing, “Actually, no. It is very much not just me.”
Brianne: Yeah. Very much. Okay. So that was an important current events conversation/historical review. So anyway, you were having a ton of side effects to this drug for narcolepsy. You’re in the UK.
Alex: Yeah. And so by this point we were coming up on the end of my contract in the UK, and I basically managed to push through, like I got the re diagnosis in January. I was able to get the Modafinil, and it was awful side effects, but it kept me conscious for like… enough hours a day. I could go to work, push through. Honestly, take some codeine or some Ativan at night so that I could sleep because I could not sleep when I took Modafinil. I think eventually I got prescribed Imovane, which was really nice. It was useful, but yeah, like really not a healthy dynamic that was getting set up there. But I was able to sort of just like push through and like barely function, till the end of my contract. And it was actually really funny because around the end of my time there, I met someone who is still one of my best friends, and he was like coming over to watch a movie. And I remember we were sitting on the sofa, and I was like shifting a ton. And I remember being super embarrassed by how much it must be disturbing him cause I like, broke up with my ex shortly after undergrad, and from that point I’d lived on my own. I was very on my own again, and I remember I was like sitting on the couch. I was like, “Oh my God, I must be disturbing him so much with how I’m shifting.” And it was at that point that I realized I was in chronic pain. I suddenly sort of had this click, I was like, “It probably shouldn’t feel like burning when I sit in the same spot for like 10 minutes, and where my hips pressed against the edge of the couch.” And this was also through the patient groups because by that point I also knew some people with fibromyalgia who talked about allodynia, that burning feeling on the skin, and it was like… I was sitting there, and I was shifting and feeling embarrassed and I was like, “Wait a minute…” At that point I was like, “Oh, I’m in chronic pain.” From there, it was like the floodgates opened, and I was realizing… I’d been so focused on the very scary cognitive things where I was like substituting words or like, walking out into traffic because of sleep deprivation. And I’d sort of wondered… I thought like, “Maybe I’ve got like a pituitary tumor.” Cause I was noticing the temperature regulation stuff, which also the Modafinil, because it’s a stimulant, made so much worse. I’d wake up in the morning, and I’d have to throw my sheets in the wash because they were disgusting. Like, it was gross. But then like the chronic pain piece started, and I was like, “Oh, there’s like a whole other thing here.”
Brianne: It has like, sub basements.
Alex: And it sort of started coming back and I was like, “Oh shit, the stuff with my knees when I was a kid. Oh my God.” And this was all just around the few months when I had finished up my contract. I very honestly did not get my contract renewed because I didn’t get any of the work I was supposed to do done. And like, I couldn’t get any other jobs because I had no publication record. I was very undesirable to employ at that point. Let’s face it. I’m still really, I could not get a corporate job to save my life anymore. So yeah, I had to move back home with my parents in rural Ontario. That was a whole thing because my relationship with my parents is a fraught one. And I also, like… I had an awful time growing up where I did. I was the queer neurodivergent kid in a very racist, very homophobic small town in Ontario. So I just like… I was super depressed with the prospect of having to go home. It was like, awful. And my narcolepsy was still not well managed. I was still sleeping a ton. This was the thing too, Modafinil would sorta work for me for like, about a month, and then it would just stop and making paradoxically more sleepy. Which in hindsight, again, it was triggering my mast cells. It was making my mast cells worse, and I was getting like a rebound reaction from it. So I got home, and my focus became trying to get some answers, trying to get some alternative treatments for the narcolepsy and trying to figure out what all the other stuff was. And I did not have anyone else in that town other than my parents. It was like, 800 meters to the nearest bus stop. And also I could get to the library, but there was no bus route that would actually take me home. So like, I literally could not go anywhere unless my parents took me. Cause also by that point, I’d lost my license because of the, narcolepsy, so like I literally could not leave my parents’ house unless they took me. And I mean, they were willing to, but also, like, you’re limited by when they’re available and also by when you’re conscious. And that also does not feel amazing as like a 28 year old, to be chaperoned everywhere by your parents.
Brianne: There’s a lot to it.
Alex: So, yeah. So by that point, I was on Twitter for like, just casual, professional reasons, and I can’t even remember how I found the disabled community, but I remember one of the first things I found was Crip the Vote cause this was 2016. And so I started participating in the chats, and like, suddenly I found a community that seemed to get some of the stuff I was dealing with. It was a total lifeline because that was… for three years that was how I socialized. It’s still how I socialize with people. Let’s face it. But for three years it was like, I had nothing else going on in my life. It was video games and Twitter. And yeah, I started seeing some of these other conversations and I was just sort of writing some blog posts. A, just to have something to do, B, in the hopes of maybe getting some freelance writing jobs eventually and having something vaguely productive in my life. And then there was a doctor on Twitter who is based actually in the UK, who also has Ehlers-Danlos and mast cell activation syndrome, and I remember she messaged me and was like, “I think you need to look into these things.” It was really funny. I’d had someone suggest Ehlers-Danlos to me before, and as so many of us have done, I was like, “I’m not hypermobile. I’m really stiff, and I don’t bend at all.”
Alex: So I just sort of like dismissed it out of hand. I was like, “No, no, no. I’ve heard of that before, but like, I definitely don’t have it.”
Brianne: I would definitely know if I was hypermobile because I live in this body.
Alex: Yeah. Like, “I definitely… like, my doctors criticize me for not being flexible enough. I’m definitely not hypermobile.” But what was interesting was actually this doctor who reached out to me, she mentioned the mast cell, and that was sort of the thing that made it click because we didn’t even mention this, but I’d have really intense gut issues for a very long time. To the point where in undergrad I was like, terrified to eat anywhere that wasn’t my apartment, because I knew I was going to have to run to the toilet, like 10 minutes later, and it was like… this is also dysautonomia, but I would like, start to feel faint because my stomach hurt so much. And I was going like, four or five times a day like, it was just dramatically bad.
Brianne: Yeah. Interfering, right?
Alex: Yeah. And it’s like, honestly, that’s been one of the most distressing sort of symptoms I’ve dealt with because it’s mortifying. A, if you’re out with friends, especially in your twenties, being like, “Hey, I’ve just got to like, go to the washroom,” and then you disappear for 20 minutes, and everyone knows what you’re doing.
Brianne: Yeah. And everyone’s weird about it at that age, I feel like, too. And maybe at any age, depending on their relationship to disability, I guess.
Alex: Honestly, one of the things I love the most about disability is how we can just like, talk about shit, literal shit and people are just like, “Okay, it’s just like part of life.” It’s freeing.
Brianne: There are a lot of bodily fluids that we just have to talk about more, as it turns out.
Alex: I remember like, I had the bathrooms on campus memorized, which were the ones that had the
Brianne: Yeah. Yeah.
Alex: doors, because I dealt with harassment. Like, people would come in and start being like, “Oh my God, why does it smell so bad in here?” And it’s like, mortifying sitting there like being like, “Oh my God.”
Brianne: “This wasn’t an intentional thing where I’m like taking secret joy from your discomfort.” Yeah.
Alex: “I really wish this were not happening right now. I’m with you.”
Alex: And I was like, “The bathrooms in the Trinity College library have heavy wood floor to ceiling doors. That is the best bathroom. Let’s go study there.” But yeah, so she sort of mentioned that, and like, that sort of made things click. And so, this was the start of my experimentation. I talked to my family doctor, and she was like reticent to refer me for diagnosis. She was like, “Well, there’s not… just take some anti histamines.” And I was frustrated with the dismissiveness, but I’m also grateful in hindsight because the fact that I started taking anti-histamines and was responsive to them were what helped me to get a clinical diagnosis. Cause this is the other thing, when I finally got in to see the allergist, he was like, “So do you get hives?” And I was like, “Well, no, not really.” And that’s… the symptoms that he was most interested in were not the symptoms that were most disruptive to my life. And this is what I’ve been thinking about so much lately, which is, how do symptoms change over the course of a disease that’s been undiagnosed and untreated for literally 25 years? Your body is going to adapt and respond, and your symptom profile is going to change. And there’s no way to accommodate that within clinical diagnostic criteria. Also somehow, I’ve never had like a positive test result for anything meaningful. I don’t entirely trust that. Cause I’ve also found out later that some of the tests that apparently came back normal did not, so I would love to see my blood panel results for everything at some point. But anyway, essentially I did not have any positive tests, and I didn’t have some of the most stereotypical things like hives, but based on the respiratory stuff I’d had, the gastro stuff I’d had, and the fact that I was starting to respond to the anti-histamines I was taking, I got a clinical diagnosis, and that meant so much because like, six months before that… this is also the thing when people are like, “Why do you care about getting a diagnosis so much?” Six months before that, I’d had an allergic asthma attack because the air conditioner was broken in my parents’ car, and so I was essentially getting like blasted in the face with aerosolized pollen for three hours while we drove to another doctor’s appointment. And so I started having this very slow… it felt like when you got pneumonia, like that burning, on fire feeling in your chest, and it progressed over the course of about five days when I finally called tele-health Ontario, and they were like, “You should probably go to the ER.” They called me an ambulance, and I tried explaining to the paramedics that we suspected mast cell disorder, but I was not officially diagnosed yet. And they decided instead that I’d overdosed on the Vyvanse that I was at that point taking for my narcolepsy, which is a substituted amphetamine. It’s a slow acting amphetamine. I remember they got there and like, I came out to meet them because the thing is my parents’ house is weird. We have a front door, but it was blocked off because they were using that room for storage. So I had to come out around the garage. So I was just watching for them and I came out. I guess they thought that was weird. But I was like, “You’re not going to be able to get in,” you know.
Alex: I guess that was suspicious for them. So they started interrogating me about my symptoms, and it’s like 30 degrees out. I have temperature dysregulation.
Brianne: Which is hot, if you’re in America.
Alex: Sorry. Yes. Yeah. It’s not pleasant.
Alex: And you know, I have issues with standing at this point, POTS wasn’t diagnosed yet.
Brianne: So were you only looking at… you were only looking at mast cell to begin with also, this was your primary?
Alex: I’d asked for referral to the EDS clinic. I was sort of wondering about POTS, but it was sort of like on the sidebar. That was a thing that no one was even willing to refer me. So I was like, “I’m going to deal with that once I get to the EDS clinic, and hopefully they’ll refer me.”
Brianne: Okay. So yeah, so you were like, “Mast cell, EDS, other shit later.”
Alex: Yeah, and I sort of was like generally aware that I struggled with upright posture, but that was on the back burner.
Brianne: “I prefer to be horizontal all the time. I was not aware it was medical. I’m starting to think it might be.”
Alex: And so like, I’m in tripod pose. I have my legs spread, my hands on my knees. And they’re like, interrogating me. And I’m like panting. And they’re like, “You seem a little agitated,” and I’m like, “Yes.”
Brianne: “This is a very distressing experience. Thank you for noticing.”
Alex: I was like, “Well, I’m struggling to breathe, and it’s made worse by both the heat and by standing.” And I tend to get kind of mouthy with I’m in distress.
Alex: Like, this is an autistic thing. I get mouthy and articulate when I’m in distress, and people do not recognize that for what it is. They think I’m like just being an asshole.
Brianne: Yeah. Like, “You must not be suffering that much if you have this much articulation.”
Alex: “If you have the capability to be that sarcastic, you can’t possibly…” I’m like, “No, no. Like, being sarcastic is what happens when things are an emergency for me. I get really sarcastic when I’m struggling.”
Brianne: Yeah, “This is distress.”
Alex: So yeah, they finally like, loaded me into the truck, and I like, because I’m a chronic patient, I brought my little pouch of meds with me. And I gave them to them, and they pull out the Vyvanse, and they’re like, “Why do you have this?” And I was like, “For narcolepsy.” And they were like, “Are you sure you didn’t take a little too much of that?” And I was like, “Actually, no, I haven’t taken it for three days because it tends to make my tachycardia worse, and I didn’t think I needed that on top of this. So honestly I’ve not actually taken it for three days.” And they were like, “Are you sure about that?” And I was like, “Uh huh.” And they’re like, “Well see, I find that a little hard to believe because I don’t know why they would prescribe you something like that for narcolepsy because you see the thing is, this kind of drug tends to keep you more awake.” And again, because I get real sarcastic when I’m upset, I was like, “Right. That would be the problem that I have as a narcoleptic.”
Brianne: Yeah, but it’s just like… you’re like, “What are you trying to say?” I mean, and you know. You’re like, “You’re saying you don’t believe me. I know what you’re saying, which is also why I’m fucking agitated right now.”
Alex: And also like, “How do you have this fundamental misunderstanding of what narcolepsy is? Like, literally the problem is I can’t stay conscious. That would be why they gave me a med to keep me awake.” So, yeah. And so I was explaining that like… I also, I told them to count the pills in the bottle. They didn’t. It was great. They literally took me to the hospital, they made me pee in a cup, and then they left me without ever checking my breath sounds, which was just amazing. My parents finally got there, and I was like, “You have to drive me to a different hospital,” where it turned out, yes, I was very bad asthma attack. And they like, gave me so many doses of salbutamol that I lost count and some steroids, and then I was better. The point of that whole detour was because I had a suspected diagnosis and not a real one, that contributed to them thinking that I’d overdosed on, in their words, my, “meth-like” medication, rather than like, I was having an allergic asthma attack that was worsened by the mast cell condition. So anyway, so I finally got the mast cell diagnosis, and this was sort of what started putting the pieces together for me because while I was in the UK, I remembered that some of the patients had been talking about the drug called WAKIX or pitolisant, which was a type of histamine receptor blocker. And it’s an H3 blocker, which is a very specific type of histamine receptor, and it actually acts in opposition to the ones we more normally think of, the ones that Benadryl blocks, which is the H1 receptor. They form a negative feedback loop, and so essentially neurons in your hypothalamus release histamine throughout the day, they bind to the H1 receptors, which causes waking up symptoms in your brain. And then throughout the day, the amount of histamine that’s being released and filling the intracellular space builds up, and so some of it starts to attach to the H3 receptors on the upstream neurons. And the H3 receptors tell those neurons to stop producing histamine as much, so then the histamine levels gradually go down, over time start detaching from the H1 receptors and the wakefulness signals stop, and you go to sleep for the night. And that’s part of how you have a 24 hour sleep-wake cycle. Histamine builds up, attaches to the H1, you’re awake, builds up, attaches to the H3, stop producing histamine, dissipates, you’re asleep. And so what had happened with this group of narcolepsy patients was they’d found that some of them had constitutively less histamine in their brains, and so they blocked the H3 receptor, and that encouraged the neurons to keep spewing out more histamine. It turned off the off signal, essentially.
Brianne: H3 blockers prevent the H3 receptors from realizing that it is time to stop.
Alex: Exactly. Exactly. Yeah. It deactivates the off switch, so you keep producing histamine, and then that histamine keeps attaching to the pro-awake receptors, and that seems completely the opposite of what you’d expect in someone with mast cell. But I was like, “This is too much to be a coincidence, right? There has to be a connection here.”
Brianne: Yeah. If there’s a relationship, this feels relevant.
Alex: The fact that histamine plays a role like, there’s gotta be something going on. And so I just started researching how these receptors work. Like, I didn’t know this was exactly how they worked at the time. This was like months of research. And finally I was like, “Okay, but like, maybe what’s happening is,” there are also mast cells in the brain. “Maybe the issue here is that when these mast cells are spewing out histamine erratically, it’s just disrupting the sleep-wake cycle entirely.” It made sense, too because I had no sleep cycle to speak of. I was also, towards that time, starting to wonder, “Do I have non 24 hour sleep-wake disorder?” Cause it wasn’t just that I was sleeping a ton, and with the Vyvanse, which is a much slower, gentler stimulant, I was doing better. I was able to sleep for like maybe 13 hours a day and not also take an extra three hour nap. And so it was like better, but it was still like… I couldn’t go to sleep and wake up at the same time every day. So there was still something weird, and I was like, “So maybe what’s happening here is that the histamine that’s getting erratically dumped out by my mast cells in my brain has just completely destroyed my sleep-wake cycle, and then as a result…” Even when I was getting sleep, I wasn’t getting quality sleep. And so over time, over the years, it set up this dynamic of utter sleep deprivation in my brain too, which was then the narcolepsy symptoms. I was like, “Okay, I need to artificially reestablish this histamine cycling.” And around that time I asked my allergist, I was like, “Hey, is this possible?” And I told him about pitolisant stuff. And he just sort of was like, “I’ve never heard of histamine being involved in the sleep-wake cycle.” And I was like, “Okay, dude, my research skills are not the ones that I’ve just lost confidence in here, but okay.
Brianne: Yeah. Yeah. Like, “What you think you’re telling me and what you have in fact told me are not the same thing at all.”
Alex: Yeah. And like, it was right around that time I had started taking Benadryl cause that was like, the easier thing to get. And so the Benadryl blocks pro-awake histamine receptor.
Brianne: As I hold up the Benadryl immediately beside me. Yes.
Alex: It notoriously makes you sleepy, right? And that’s because when histamine binds to the H1 receptor, it makes you awake. So it blocks that H1 receptor. So I started taking it at night to restore the nighttime half of that cycle. And this is the other thing, too, so it works the same way… This is me now info-dumping about brains.
Brianne: I want it. I’m so into it.
Alex: As opposed to other anti-histamines like cetirizine or loratadine, so Allegra, Claritin, Reactine, those are the newer generation anti-histamines, and they’re designed so that they are worse at crossing the blood-brain barrier. The whole thing with the first-generation H1 blockers is that they cross the blood-brain barrier really easily, which is why they make you sleepy, because they can then bind to the H1 receptors in your brain. And that’s exactly why they developed these newer ones, making them specifically worse at crossing the blood brain barrier, so that you can get the H1 blocking within your body without having it happening in your brain, which is great if that’s what you need, but also sometimes you need it happening in your brain. So I started taking Benadryl at night. And WAKIX at that point had been approved in the UK and the EU. It had not been approved in the US. They’re now in trials in the US, which is amazing news for so many people. It is probably not going to get approved in Canada anytime in the next 10 to 15 years because, this is another thing about Canadian healthcare, our low drug prices are very good for getting access to common first and second line drugs. Awesome. Very good. Drug companies suck. They also have no impetus to test new drugs in our country, so we do not have nearly as many drugs as you all do.
Brianne: I would like to add… people get mad at me when I say this because it offends people, but the Canadian healthcare system relies so heavily on the American healthcare system.
Alex: Oh yes.
Brianne: Obviously it’s so much more complicated than this, but one reason that Canada can get away with just like never improving… There’s a ceiling on the care that you can get in Canada, and it is much higher than the ceiling of the NHS has… Which is like one of the things, right? Cause in the UK, you hit that ceiling pretty soon, and then you’re like, “Cool, do I wait forever? Or do I go private?” which is a problem. In Canada, you hit the ceiling, which is higher, and a few people are like, “Cool. Do I go to the States?” It’s not as many people because it’s significantly more expensive. It is not designed to serve that purpose, but like, a not insignificant amount of chronically ill people who need LDN, who need Lyme treatment, who need EDS treatment, who need endometriosis treatment, to the States, and they don’t talk about it that much because they get yelled at.
Brianne: This is a real thing.
Alex: I love that you brought this up cause this is one thing I wanted to mention about the UK, too. There was an attitude I ran into, too, which was, “Well, if you don’t like how long the wait times are, go private.” And it’s like, “Okay, but I mean like, not everyone can do that.” On the one hand, there’s this risk with supplementary private systems that, that’s sort of the dismissive attitude you’ll get. They’ll be like, “Well, if you don’t like waiting, then you have an option.” And then meanwhile, here in Canada, when I was like… I was for a time concerned that possibly I had vascular EDS because of the severity of my bleeding issues and because of a couple other medical incidents I’d had that involved scary bleeding episodes. And I was asking about genetic counseling, and I was like, “Is there an option to go private?” Like, maybe I could do a GoFundMe or whatever. They sort of smugly were like, “We’re very proud of having an entirely public system.” I’m like, “I mean, great, good for you. I still would love to know if I can get this care anywhere.”
Brianne: Yeah. There’s so many good things about the way the Canadian system operates. Like, sincerely, extremely sincerely, but the fact that there was just not a pathway for things that don’t like… there’s not a like direction to point people in. That’s like, “Hey cool.” Even if the way… I know this is changing with EDS, but it’s not like, “Oh great. We do have a pathway for people who are difficult to diagnose, complex cases, whatever, whatever. It’s just shitty.” They’re like, “Oh no, we don’t have that pathway. Thank you for coming.”
Alex: I would argue that it’s not even changing with EDS because the thing is we have the clinic here now, and this is my personal conspiracy theory, I think the clinic… it’s not, I’ve heard other people articulate it. I think the clinic exists so that when those people who can afford to go to the States, go to the States, and go to the news about having had to go to the States, they can say, “Well, that was your choice. We have a clinic here.” Because the number of people who I know who have actually gotten meaningful care from there is less than a handful, and I know so many more people who have had experiences that were like… They sent me into a depressive episode with how invalidating they were. They didn’t want to refer me to POTS diagnosis cause they said, again, “Well, there’s nothing you can do for that other than drink water anyway.” And I was like, “Okay but again, I need the diagnosis.” And so like, I had to fight really hard for them to even refer me to the POTS diagnosis. I initially asked them to refer me to the allergist for mast cell diagnosis. They flat out refused, and finally, I went to my family doctor. She finally agreed that time.
Brianne: It’s obstructionist.
Alex: Yeah. They offered me one session of physiotherapy. I declined because I was in such a bad head space because of that experience. I’ve since heard that that physiotherapist has injured several people. So I’m really glad I didn’t go. And they offered me an appointment where we’d have to pay out of pocket to get insoles made for my shoes. That was the extent of what I got from that clinic.
Brianne: That’s not great. Where is it?
Alex: It’s at Toronto General.
Brianne: Okay. It’s in Toronto.
Alex: They have the accompanying clinic at Sick Kids, which I have heard not much better things about. So yeah, it exists in name, but I think in large part, it actually exists just to be like, “If you go to the States, we can say that was your choice now.” I think everyone thinks the grass is greener, and having experienced two out of the three of these systems, and you having experienced two out of the three, they’re all terrible in slightly different ways. You can’t get good care under any of them. If you’re chronically ill and disabled, none of them exist to offer good care for people like us, and the ways in which they deny us care just change very slightly in each.
Brianne: Yeah, like it matters a lot that people go bankrupt seeking a diagnosis in the US and may not even get one. This isn’t even whataboutism. It’s just that, like, that is like the sub-basement, again.
Alex: Yeah, the fact that I was able to like, have an ambulance called for me, and like, we had to pay $45 for it, as opposed to like… I’ve seen people on Twitter crowdfunding cause a stranger called an ambulance for them, and now they’re out of pocket, like a thousand dollars. That’s a meaningful difference for sure. But like, then at the same time I have people from the States being like, “Oh, have you tried this drug?” I’m like, “I can’t.” Even if it’s approved here, there’s no pathway for me to ask for it from my doctors because it’s third line, and they’re just simply not willing. You can only get first and second line drugs here. Unless you go through the five years to get to the specialist-specialist within your field, there’s like no chance that you’re going to be able to get that third line drug and like, experimental and off-label? Forget it.
Brianne: This is actually a really interesting thing because one of my… aside from how it impoverishes people on an immense scale, which is definitely number one, my number two beef with the United States healthcare system that doesn’t get discussed enough is the administrative burden on patients is just enormous. So like, most patients, even most chronically ill patients, if you’re not looking at this level of care in Ontario at least, healthcare is practically frictionless. You have your card, you give it to them. I know it’s not everybody, as a regular person, when you’re seeking diagnosis, it’s pretty frictionless. In the States, as a regular person seeking diagnosis, you are already putting just an incredible amount of cognitive overhead into like, the very basic administration of care and that still blows my mind… how much time it takes up. But then it’s one of those things that in Ontario, for example, that escalates very, very quickly if you have complex needs. So if you need specialized drugs that not all doctors know how to make the case for cause it’s not just a matter of prescribing. If you need funding for your drugs because also drug care is confusing in Ontario. Drugs aren’t covered, but they’re cheaper, but really expensive drugs are sometimes covered by Trillium.
Alex: this is a whole thing. my God. Yeah. But yes, I totally see what you mean there.
Brianne: You don’t hit the friction until much higher up with OHIP.
Alex: Exactly until you need those… I’ll talk about in the same terms as drugs. First tier care which is like your family doctor, whatever, and like second tier which is like maybe the local specialist clinic. Once you get to the third care which is like, the person who’s at Sunnybrook in that one clinic who actually knows about narcolepsy or whatever and that’s the friction.
Brianne: Yeah, it escalates very quickly.
Alex: Yeah, exactly. God. Yeah. The drug thing. We’ll get back to that. But yeah so the H3 blockers… so essentially I was just reading, and like eventually I found that there is a chemical called conessine, which is also an H3 antagonist, H3 inverse agonist, marginal difference in case any biomedical scientist are listening and want to get anal retentive with me.
Brianne: They were about to like, send you a message on Twitter about it.
Alex: “It’s actually not an antagonist. You’re clearly just a quack. Clearly. Self-diagnosing is not very effective.”
Brianne: “None of this language makes any sense because of that one misuse of a single word.” I love it.
Alex: Anyway, so inverse agonist. And it turns out that it exists in some plants. One of which is thankfully used in Ayurvedic medicine and therefore can be bought through Ayurvedic medicine websites. So I bought the syrup and that’s now my daytime medication. And literally, so I started taking the Benadryl and literally the next morning after I had that, I woke up after eight hours and I was like, “Holy fuck. This is doing something.”
Brianne: So just Benadryl first, like Benadryl before bed.
Brianne: Sleep quality notably improved.
Alex: Yeah. And I started it cause I was like, “You know what? It’s worth a try.” And like, it took a few weeks to order the other one because it was coming from India. So I was like, “Might as well try it, see if anything happens.” And I woke up after eight hours and I was like, “What?” And I didn’t feel great, but I didn’t feel more tired than I had when I went to sleep, which was huge. I’d literally never woken up feeling as tired or less tired… I would wake up feeling like you do after you’ve been on like a bender.
Alex: Waking up feeling hung over literally every day. So I woke up after eight hours which… I’d been sleeping. 13 hours straight for several years at that point. I was like, “Whoa.”
Alex: Yeah! And then about like a month later the kutaja, which is my Ayurvedic herb arrived, started taking that in the day, and I had energy. I still dealt with fatigue, but I was like awake. I could eat, and I wouldn’t immediately fall asleep after. I could sit in the car and not fall asleep. And it was incredible. It was like mindblowing, and yeah, I had a sleep cycle, and I could predict when I was going to… It was just magical. It was like just unbelievable.
Brianne: Literally life-changing.
Alex: Yeah. I was thinking about this, too, last week cause I’ve also hacked my chair with some snow tires and gotten appropriate winter clothing cause I can wear the clothing cause it’s not too heavy now that I have a chair. And I was outside in the snow, and I was like, “This is…” you know, those videos when you see babies like try cochlear implants for the first time, and everyone’s like, “Oh my God, this is so inspiring,” except it’s not because what they’re actually showing is like distress from sensory overload. But I’m like, “This is the feeling that those people watching those videos think that they’re experiencing.” I’m like, “This is like the most inspirational garbage that you could possibly imagine.” And it’s also funny cause I would tell my doctors about it, and none of them ever really explicitly said it, but they would A, focus in on, “You know, it’s dangerous to take supplements. Who’s your naturopath?” Or allude to the fact that, “Oh, maybe this was all just hypochondria in the first place.”
Brianne: Yeah, like this is the placebo effect from medicine.
Alex: Yeah. “So clearly this was all psychosomatic to begin with.”
Brianne: What really, really strikes me also from your comparison is like, this moment of joy that you’re describing is not a story about medicine coming to help you. It’s a story about you finally like, seeing past all of the crud that medicine has put in your way for your entire life. Literally you’re in this moment like, “I’ve been trying to fix this externally forever, and it hasn’t worked. And so I’ve done something else.” It’s inverted in every way.
Alex: Yeah. This is the thing, too. It wasn’t even about fixing a problem in my body. It was about learning to listen to my body and understand… I love what you said last week about learning your body’s vocabulary. Like, that’s literally been it, and now I feel like I’m working with my body rather than constantly fighting against it. And it’s a fundamental shift from what medicine tries to do, even though in a lot of ways, it seems like there’s no difference. I’m treating a thing. I’m looking at the molecular interactions trying to figure out, what are the building blocks, but it’s literally… I’ve been learning the language of my body and what each of these things means. If I’m flushing, I’m like, “Okay, like, what are the triggers that are happening? I maybe I need to rest today.” I now feel like I’m working with it rather than fighting against it, and it still has limitations. It’s still kind of like a screwy body, but like now I know the ways in which to not fight against that and not make it get worse.
Brianne: Yeah. This is where like, where I’m at in my head of trying to untangle some medical model stuff too, so just get ready for some language. I feel like this is a place where cure discourse really becomes meaningless very, very quickly. You’re like, “Okay, I want research and treatment options and better medicine because it is so clear to me how I have been hurt by the lack of those things in my life.” Literally this entire conversation is like, “Here are all of the times that doctors didn’t know how to recognize the serious thing that was going on.” So like, it is so clear… This is an invisibility thing. When it’s medically invisible and you become aware of that a couple of decades later, it is so clear in retrospect what the impact of that was. And also, I don’t know, now looking back, it’s like, “Oh, as I can read the patterns,” which is kind of like what you’re describing right now, like, “Oh, that was mast cell. Oh, that was the dysautonomia.” You’re like “Suddenly I’m a lot less invested in the idea of getting cured and a lot more invested in the idea of just like stopping before things get that bad.” But that was never an option before. It’s not like, “Oh, before I was an asshole who wanted a cure.” It was just like, “Before I was miserable with no explanation and I wanted to not be, and now I have an explanation, and so my entire perspective on like what a good life looks like has evolved. but it’s not because I was an asshole before.”
Brianne: I don’t know, there’s something in there that I am not quite at, but I feel like it’s there.
Alex: Honestly, this is one of the main things that my business partner, Liz, and I are trying to unpack in our own work. Cause this is the thing, it has underpinned so much of… we’re like totally pivoting now to the design side of things, but like, it has underpinned so much of the way we think about design, too cause this cure, visible/invisible dichotomy applies to design, too. When you think about the things that are designed for disability, those are always things for medically visible disability, and they’re structured in a very particular way. They’re about overcoming. And we’re just… invisible disabilities… invisible, it’s just not there. And I’ve been like, “I can’t keep erasing myself in the work that we’re doing. We need a model that accommodates that.” And this is a thing I’ve been trying to unpack for myself, too with regard to cure because in a lot of ways, functionally, I would say my narcolepsy is cured. Functionally, I am not narcoleptic anymore. It is still absolutely a part of my identity, but it’s not a part of my day-to-day life. And I would also never want it to be. I would never begrudge anyone with narcolepsy wanting a cure because… like, this is the thing too, you know, Liz and I have talked about like… the thing with cure, too, is that it’s so appealing to the abled gaze that it diverts all the money that could exist for accomodations and for research and for treatment… research and treatment that aren’t cure oriented. But at the same time, there is no accommodation that could have made living with the narcolepsy that I had, and maybe some people with narcolepsy find it more bearable, for me, there is no amount of accommodation that could’ve made that bearable. I could not have survived much longer. Like, I was contemplating not living any longer. Cause it… when I say I was living a half-life, I feel that certain disabled people get really uncomfortable with that, it was a literal half-life. I was sleeping upwards of 16 hours a day. I was literally conscious less than half the time you all are, and when I was conscious, my brain was functioning as though it had been sleep deprived for at least three days, which is literally how they torture people in Guantanamo. It was a perpetual state of torture. There was nothing about that existence that was bearable. So like there’s no amount of accommodation… and I mean, even sort of setting aside how we’re bad at accommodated things like time. One of my favorite design problems to pose to people is like, “How do you design an accommodation for asynchronicity or for non industrial time?” And I love that as a design question, but even putting that aside, that would be great for people with non 24, you know, or delayed phase sleep disorder, but…
Brianne: It assumes that you have a few… There’s not a good language for this because it’s like functionality language, which we already know is not really that helpful. It’s like, “Okay, cool. Let’s accept that, and then only use it personally.” But if we use it personally, the relativism messes it up. But…
Brianne: You’re just, you can’t use your brain.
Alex: Yeah, exactly. There is no level of accommodation that could make existing in that brain not awful. And that’s such a hard thing to talk about within disability spaces. And so anyway, this is like… the model that we’re developing which hopefully… we’re applying to some grants so that we can hopefully buy ourselves a few months to write cause this is the other thing too, like, turns out we can’t teach and consult and also write at the same time because we’re disabled.
Brianne: Who would’ve thought that would be overwhelming?
Alex: Yeah, we need to buy ourselves a little time. So hopefully, hopefully we can get some grants and actually finally write this paper or whatever it turns out to be. I dunno… I don’t necessarily want it to be a journal article cause I want it to be for the community.
Brianne: That line’s a hard line to navigate: what is for the community and what is for the academy or whatever.
Alex: Exactly yeah. And so I’m calling it the phenomenological model, which sounds very much like it’s going in the academy, but I liked it. So what we’re saying is, the medical and social model are named in deceptively simple ways, and they’re actually… there’s a lot of complexity. We’re hoping that we get all the complexity out of the way in the name.
Brianne: Yeah. Problem solved.
Alex: But essentially we need a model that captures both what’s shared between these categories of disability and what is really genuinely distinct within them. And so where I’m at is that disability, I think, is the state of living within a bodymind that society seeks to erase, but the thing is there are very different ways in which it seeks to erase different disabled bodyminds. And so in some cases, it seeks to erase them by preventing their existence, and that’s gene editing, prenatal screening, abortion. And that is very often people with intellectual and developmental disabilities .That’s sort of where the majority of that is aimed at. Then you have the medically visible, somatic disabilities, and they erase through overcoming and cure, right? So they try to cure you, and if they can’t, they build you a standing wheelchair so that functionally you’re not disabled anymore. And then you have the medically invisible disabilities which they erase by telling you that you’re not disabled at all. And you know, it’s not three neat categories. There’s overlap between them, obviously.
Brianne: Ton of permeability. Yeah.
Alex: Yeah. And like, there are other disabilities that may fit more or less into other categories. There are probably other mechanisms that I haven’t noticed yet, but those are sort of the three key ones that I’ve noticed. And they give rise to incredibly different embodied experiences and relationships to disabled identity. And so when you’re someone who has experienced that refusal, you want to know what is going on your body in a material way. There’s something validating about knowing about the materiality, and you relate to that materiality of disability in a way that I think is very different than if you’re someone who has only ever had your body treated as something that needs to be fixed. And yeah, it’s meaningful. And it, it has such an impact with regard to like policy and stuff too. Like, I keep going back and thinking about the 21st Century Cures Act, which I think was in 2016 or 2017, and the disabled advocacy community was for the most part, very against that. And I remember I was so frustrated because one of the things that was doing was to try and sort of like lower the threshold for approval of drugs that are already being used as off label treatments, and the medically visibly disabled advocates were saying, “This is dangerous. This is going to lead to like really shoddy approvals and them coercively pushing drugs that have been under studied on people.” And I’m like, “Or it means that people with idiopathic hypersomnia are finally going to be able to get insurance coverage.” And that was just nowhere within the conversation, and I’m… honestly, I’m still mad about that.
Brianne: One thing that also is like… that I know you’re aware of, cause you’ve talked about it, but I just want to like make it explicit, is that not all conditions are primary, and that is not a part of a lot of conversations about healthcare and medicine. And it’s kind of what you just said about your narcolepsy, is you’re like, “My narcolepsy is functionally cured.” But like, the kind of reality of it is that you’re probably never not going to have a connective tissue disorder or a mast cell disorder. But all of a sudden, by being diagnosed properly and like, with access to some of the tools and treatments that can manage this, you’re still disabled, but all of a sudden, all of your like secondary conditions that had previously been labeled idiopathic are comprehensible and manageable and sometimes cured. And it’s a huge thing in our community because like, as we’re seeing that there are more and more structural causes of ME, for example, how do we talk about this? If someone has EDS and they have ME, and their ME was diagnosed first, and their EDS isn’t diagnosed until their ME has been cured…
Brianne: That’s not a bad thing, and it’s so often framed as like, “They just want to get out of the disability community. They’re abled, blah, blah, blah, blah, blah.” No, a lot of people with medically invisible conditions literally are like, “I am so disabled. I have no interest in not being in this community. I’m like into this identity.” And as you just said, “I cannot live under these conditions anymore.” And I think an important thing to add is that no amount of social support would make this situation livable. Here’s a thing that I don’t want to get into, but that is also relevant around end of life, is that there are two problems if you are disabled. I mean, obviously there are many more, but I’m trying to talk about one. There’s like, you can’t take care of yourself because you don’t have the resources to do it because the government has eroded the safety net or did not create it or whatever it is. That is a societal problem. Also, you could be optimally supported in every way and so sick that that does not impact… it maybe impacts your baseline stress levels if you’re not impoverished, and you’re cognitively functional enough to care about that. But you also might not be if your capacity to be awake, which is like… ME functions differently, blah, blah, blah. But like MCAS creates a lot of these same things. That is a really important nuance and I to rip my hair out when I see people not acknowledge it or like not be aware of it.
Alex: Yeah. One time I almost started a kitchen fire because I went to make tea, and then I forgot within like two minutes. And I went back downstairs, and then like an hour later, I was like, “Fuck, why does the house smell like smoke?” And I went upstairs, and I had literally, like, my mum had one of those really nice enamel painted kettles from like Le Creuset or whatever. The water obviously had all burned off, and I’d melted the fucking kettle to the stove. And it was like, it’s funny in hindsight, but at the same time, I was like, “I can’t make myself a fucking cup of tea safely.”
Alex: That’s just so it’s… yeah, it’s like, dehumanizing and horrible. Like, you can’t do anything safely on your own. It’s like, again, like, you know, infantilizing disabled adults… but you feel like a toddler, like nothing… You can’t do anything for yourself, and it’s awful.
Brianne: And when it’s in the middle stage… so for so many people, right? There’s like, when you actually realize there’s so much of a problem that you can no longer pretend to live in the world anymore and then when you find out the name of that problem, and that gap can be… have a lot of different sizes. But like, in that time you’re like, “Nothing is working. I don’t know what it is. And I don’t have the tools to evaluate what’s safe and what’s not.” All the time when you’re trying to have these conversations, people will be like, “Okay, but in an optimally supportive environment, your kitchen would be accessible to you.” And you’re like, “Yes, I want that. And also, I want to know what would make a kitchen safe for me because I don’t know right now, so even if I had $5 million for the best kitchen reno in the world, it would not be a more accessible kitchen.”
Brianne: So I have a lot of feelings about that.
Alex: Yes. Same.
Brianne: Yeah, cause it’s like, it can hit the first thing where people are like, “What you think we just don’t need support then, because you should just be well enough that you don’t need it?” And you’re like, “No, I think we should have support, and I think we should have the tools to identify what kind of support we would benefit from.”
Alex: Yes. Yeah. And that’s the thing like, for me, diagnosis was the start of finding that language. It was having a framework to understand. And also I think it’s important to acknowledge the fact that I found that language through diagnosis did not in any way come from the clinic.
Brianne: Right. You brought it to them.
Alex: They affirmed the things that I brought to them and put it on paper so that I could apply for benefits and also like gave me a slight sense of official validation that, “Okay, I’m going down the right road here.” But once I had those diagnoses, those answers, through my own research, through other chronically ill and disabled people, I was able to start being like, “Okay, well, this is why this is happening. And therefore, these are the things that I can do to support myself in them.”
Brianne: Yeah. 100%. Yeah. And like you just said… okay, I do want to get back to our main track, but like you just said, like, when you ask people to brainstorm asynchronicity, it’s so difficult. And that’s it like, cause I feel like I’ve been very much in that this year cause I’ve had like so many health conundrums, we’ll call them, I’m like, “Okay, I have already accepted that I’m never going back to the 40 hours a week world, and that’s been fine.” But I was like at a stasis of 10 hours a week, and then I lost my 10 hours a week. And it was like, “Okay, what tools do I have available to still participate in the world when I can’t predict this?” And that’s difficult. Okay. But you must’ve also been wrestling with that question, so sleep cycle.
Alex: Yes. Oh God. Yeah. It literally felt magical, and it was like, the first time I sort of had a glimpse of like, “Okay, I’m going to be able to like, move out on my own eventually.” I have a difficult relationship with my parents, let’s put it that way. And I could not fathom the idea of being there for the rest of my life, and so I was increasingly desperate to find some way to allow myself to move. And this is again, what we were talking about, I literally could not. Like, even setting aside money and affordable housing, I physically could not live on my own because I could not make a freaking cup of tea without setting something on fire potentially, so, difficult. So like, it was when I fixed my sleep cycle that I finally sort of started to have a glimmer of hope that like, maybe I could have some kind of future. Not just like in a, you know, again, in a like productive abled gaze sense, but like literally just like, “I can continue to exist in a way that’s tolerable. This is great.” It was like, it sort of like gave me confidence in the fact that, “Okay, I can do this. I can continue finding ways to treat myself. This is a valid way to go. I’m not just completely grasping at straws here.” And that was sort of like, that’s been the next couple of years. Right around that time, I finally got my POTS diagnosis, and that is like, the only thing where I’ve ever actually had a positive test result. It’s not just been like, clinical. Like, “Sure. Okay. You have HSD or MCAS.” And I actually got that, and that meant a lot cause like, finally I have a thing on paper. So then I was able to apply for disability benefits, which nearly enough money, but I’d been getting $450 a month. So I got $400 to pay my parents for room and board, and then I got $50 for everything else.
Brianne: That’s It’s like $1.10 a day or something.
Alex: Yeah. And I mean, this is the thing, too. This is going back to the complicated Ontario drugs thing. So like the main drugs that I take are anti-histamines, which are available over the counter, and I could get them prescribed. I could get them prescribed, and I get the Ontario drug benefit. So I get some of my drugs covered because I’m on ODSP now, and I was on OW unemployment before. So technically I’m… I have PharmaCare here, but the thing is, most of my drugs are things that you can find off the shelf. So even if they were prescribed and we try to apply for the exceptional access benefit, we’ve tried to apply for that so many times, and it’s gotten denied every time because, “Oh, well, those are just off the shelf drugs you take for allergies.” I’m like, “Right, but I take them… I take four of the tablets every day. You’re supposed to take one. I take four of them every single day of the year. It kind of adds up.” And so I order those meds from Amazon US. This is the funny thing, too, cause like, there’s the stereotype of the American crossing the border to come and get their meds from Canada. I order most of my meds off of Amazon US because I can get my anti-histamines for like, five or 10 cents a pill. If I go to Walmart here, I can get them for 30 cents a pill, which I can’t get to Walmart cause I don’t have a car, or I can get them from the local pharmacy for 50 cents a pill, or I can get the prescribed for 75 cents a pill.
Brianne: Like, “This is working.” Are OTC meds taxed in Ontario? I don’t know that. Or like, I don’t remember. Like, do they have HST?
Alex: That is a good question. I don’t think they are.
Brianne: Just cause… this is a weird thing here, probably also there, about like weed. Stuff that’s sold both recreationally and medically, I know that OTC meds aren’t recreational, but let’s pretend for a second that they are, is it’s like, if you go to the dispensary to buy… I’m in Massachusetts. So a lot of them are… there’s medical dispensaries, and then when they made recreational use available, medical dispensaries basically applied for a license and then started selling recreationally.
Alex: Oh, interesting.
Brianne: And maybe there are rec only now, but I don’t think so because they also got shut down in lock down for a while. Anyway, the point is you go to the same place. If you have a medical card, you don’t pay tax. And if you are buying recreationally, you do pay tax, and it’s taxed at 20% because it’s like a sin tax. Like, alcohol, if you go to the LCBO, and you go to buy vodka, and you’re like, “Why is this three times as much as it would be in the States?” It’s because it’s Canada, and it’s because it’s taxed. And so it’s the same thing. Like, sales tax in the States is much lower. And In Canada you pay higher sales tax, and you get healthcare. So maybe there’s a reason for it, but like, in these like, weird little idiosyncrasies, sometimes prices get distorted. That’s what I was trying to say.
Alex: Yeah, totally, totally.
Brianne: But it doesn’t matter. The answer doesn’t matter.
Alex: Yeah. I mean, I am extremely not for free market capitalism, but it also does mean you got like a lot of generic drug manufacturers, and you can get off the shelf drug for 10 cents a pill, which can be helpful. It’s fundamentally a policy failure, too. This could be addressed within policy. It’s just, they’re not bothering because they think, “This affects like five or 10% of the people. Who cares?” And they don’t bother to think that those five or 10% are maybe some of the most vulnerable people in our country. And like, it’s recognized too, because I remember when I was on OW, which is our unemployment benefit, I was talking to my caseworker about this, and I had an amazing caseworker. She was a really rarely amazing, committed person. I was talking to her about this, and she said she gets it because there’s another family that the kids all had pink eye or something. Maybe it was lice. They were school-aged kids, so it was like, some common schoolish thing. And the mother was in tears because she had four kids, and she had to get the drops or lice shampoo or whatever it was. And it would not be covered under ODB because it was available OTC. And this is the thing I think about too, when I see people campaigning to make hormonal birth control, non-prescription. And I’m like, “If you do that, you need to be really fucking sure it’s still going to be available to the poorest people. Because as soon as you make it non-prescription, it’s going to end up getting kicked off a lot of these poverty drug benefits.” And like, that’s not a thing that anyone really thinks about. When I see people advocating for non-prescription hormonal birth control, I see people advocating for something that they’re unintentionally going to reduce access to some of the most vulnerable people who need it.
Brianne: Yeah. It’s like, “You don’t realize this, but you’re advocating for a luxury market.”
Alex: Yeah, it doesn’t need to be that way, but.
Brianne: It already is.
Brianne: We’ve seen it in so many other things. When they become available commercially, they’re available commercially in such a way that they are only available commercially, and they are only available to people who can afford commercial rates.
Alex: Yeah. And I mean, it’s such a weird thing cause I’m like… I want every drug to be non-prescription. Like, I am not for medical gatekeeping, but also you need to understand what you’re doing when you do this.
Brianne: Yeah. Yeah. Like, I don’t know what the is, but this one working well.
Alex: I am all for everyone being able to decide what medications they need to take, when, and just having the doctor there for guidance. But at the same time within the systems we exist in…
Brianne: Yeah. Within the system that we exist in and the number of cracks that you can fall through, it is easy to see how those might not have been accounted for in this particular initiative. Perhaps all of them. Yeah. So yeah. So drug prices for you were also a factor. You’re just aware of it.
Alex: Yeah, exactly. I can not even remember, once again, how I got on this tag. Oh yeah, I continued doing my research and doing my experiments, and like, I just started finding out more and more stuff. It all started to come in together in a way that, if you were like, writing this as a book, you’d be like, “This is all coming together maybe a little bit too neatly.” Everything had started with the bleeding disorder. And the one thing that was always sort of bothering me about that was that they’d say, “Well, your platelet counts aren’t low enough to cause spontaneous bleeding.” And I’d be like, “Okay, but I get that.”
Brianne: Yeah. “And?”
Alex: And then they’d just turn and walk out of the room. I remember one time he just was like, “Mm,” and just sort of like turned, and they never explained it. They don’t do them anymore, but they used to do something called the bleeding time tests, which like they do like a little automatic scalpel, and it’d do like a little, like, one centimeter long, standardized depth and width cut in your arm, and they’d time the bleeding. And that would be to identify like, essentially, how effective your clotting function is.
Brianne: Like your coagulant? Yeah. Okay.
Alex: Yeah, exactly. I’d been tested for everything. Beyond the lupus and the AIDS and leukemia I was also tests for like Von Willebrand, for hemophilia, like, just everything they could think of and it was nothing. But I did have a couple of bleeding time tests, and they would always do the spiel at the start where they’d be like, “You know, we’ll let it go for up to 20 minutes. If it goes for longer than 20 minutes, we’ll apply pressure to stop the bleeding so that you don’t bleed too much. Don’t worry. We never have to do this.” And I’d be like, “Don’t worry. You’re going to.”
Alex: They’d sort of laugh and be like, “Oh, you’re being cute. Like, no, no, no, no, don’t worry. We literally never have to do that.” And I was like, “Okay, whatever.” 20 minutes would go by. And they’d be like, “Oh,” every time. And so like, I maxed out the bleeding time tests, you know, and they never went anywhere with that. And so this was always like, sort of a missing piece of the puzzle. And like that my platelet counts never matched up with the bleeding. For me, this was always like, I want to know why.
Alex: So it turns out that one of the other things that is contained in mast cell granules and which they release when they’re overactive is heparin. And of course, heparin is an anticoagulant, but also, if you have the opposite problem of me and you have a clotting disorder and you’re on it long-term to prevent clots, one of the things that it can cause is drug-induced low platelet count. So I was like, “Interesting.” So yeah, so I honestly, one of the things I desperately want to try some day is to find a doctor who will… there’s… is it protamine? There’s one drug that is a heparin antagonist, and I like, desperately want to try it just cause I want to see. I want to like know for sure, but I also found some like really admittedly, very poor quality old in vitro studies from like the seventies that had found that vitamin C can antagonize heparin. So I started taking a high dose of vitamin C, and I have actually found that… and it’s probably also contributed to by the fact that I take mast cell stabilizers now as well. But, yeah, I don’t get spontaneous hematomas anymore. I could shave my legs and nick them, and then five hours later, not notice that I have like a giant streak of blood down my leg. And then be like, “Oh, that’s why people have been freaking out when I walk past.” I remember one time I was like playing badminton, like in undergrad. And someone’s like, “Oh my God, what did you do to your leg?” And I was like, it was this huge smear of blood. I was like, “I was shaving earlier.”
Brianne: “It was a long time ago. It’s over now as far as I’m concerned.”
Alex: And so, yeah. And like, I don’t get spontaneous hematomas. It used to be, the cat would sit on my chest, and then I’d have an egg on my chest. Or like, I was wearing a watch, and I’d have an egg on my wrist, and that does not happen anymore. So pretty sure, but also I’d really like to try protamine one day cause I just, I want that win, you know?
Brianne: You’re like, “I just want the data.”
Alex: Yeah. I want the protamine, I want the platelet count, and I want the bleeding time tests just to know for sure. Although, it was really funny cause my… the hematologist I was seeing at the time lectured me about the vitamin C and about how, “It’s dangerous to take supplements because you don’t know exactly what’s in them. And you know, we’ve had patients come in, in liver or bone marrow failure.” And I was like, “Okay, well then what can you offer me otherwise? I acknowledge what you’re saying, and I’m open. So what are you offering me?” And she just repeated, “Well we can’t endorse you taking supplements.” And that was just like… it was a circular conversation. We kept going back forth. I was like, “Right. But okay. You understand that I’m saying I can’t tolerate living this way anymore. I’m going to need you to offer me an alternative.” “Well, we can’t endorse you taking supplements.” So I was like, “Good talk. Thank you.”
Brianne: I hate how often and how many medical professionals have been so trained to completely reject… and like, I get it, people look for connections where they don’t always exist. Fair enough. I understand. You probably get a ton of weird theories every day, but at the same time, it’s wild how often doctors will be like, “Well, the thing that you’re doing, that’s working for you. I don’t support.” And you’re like, “I’m confused what you mean by that.” Because it happens sometimes with diet, too, right? Where they’re like, “Well, studies show that diet doesn’t have an impact. So do that if it makes you feel good, but really it shouldn’t.” And you’re like, “Why am I trusting you with anything? It’s fine if you don’t have an explanation, this isn’t your area of expertise, not a big deal.” But when they’re just like, “Hmm, I don’t think that that’s true.” You’re like, “Okay.”
Alex: The allergist, too, the one who had never heard of histamine being involved in sleep-wake cycle, which is like, Chronobiology 101, but whatever. I told them I was taking the Benadryl, and he’s like, “I would not recommend that. I mean, it makes you fall asleep, but it doesn’t give you good sleep architecture. And there have been studies that have found that it causes cognitive decline with long-term use.” And I’m like, “Right. But I mean, it doesn’t give normal sleep architecture to people who have… not mast cell disorders. So when I have an abnormal sleep architecture that appears to be caused by my mast cell disorder. So… you think maybe it might actually work for me in a way it doesn’t work for people who have a different sleep issue?” I don’t know. And then also like the cognitive decline studies, I’m like, “I know the studies you’re talking about, and they were done on elderly people who have constitutively decreased cholinergic tone already. Taking it during the day in long-term care settings. I’m taking it at night. I have symptoms that are indicating I probably have increased cholinergic tone. Why are you thinking these studies apply to me?
Brianne: Yeah. It’s amazing how often that continues to come up, where you’re like, “Yes, I hear that a typical body responds to this in this way, and I believe I’ve been trying to tell you for decades that my body is in fact, not typical. So this information may be irrelevant, even if it is very helpful to people with typical bodies. I don’t know. Maybe.”
Alex: Yeah. There’s like, so little criticality in their training and in what they do. It’s just, it’s absolutely wild.
Brianne: It’s so interesting. I think now, too, as like a thought exercise that is fruitless, to just be like, “What would it look like if we were starting from scratch right now?” Because I can see how much of this is just rooted in a history that is no longer relevant. We know different things than we knew when medical schools were founded to keep women and black people out of medicine. We know different things than we knew then, when the entire medical board was established like, for that purpose to shut down other medical schools and only let white men be doctors. That has shaped all of our care. This is a United States example, although I know that that didn’t only happen here. Our medicine in North America, in the UK, in a lot of Europe… like, we’re all kind of coming from this same one like, “How do we keep everybody else out of this field by making it not helpful and kind of confusing?”
Alex: Oh my God. So this is like, one of my special interests, but looking at like, medieval medical history and like, this is… because one of the things I’ve always been so interested in is like, when did we get into this idea that it is dangerous to treat yourself? Because it’s such a knee-jerk reaction. This is a large part of why I stopped being as active in Facebook, chronic illness groups because I’d talk about this stuff, and I’d have… my posts would get deleted. They’d have disclaimers, and I understand why they’re also wanting to protect themselves from liability. And there are also like… there are predatory, like MLM people who go and be like, “Hey, have you tried this essential oil? ”
Brianne: Yeah, it’s hard for that reason.
Alex: Yeah. But there’s also this knee-jerk reaction that, “Oh my God, that’s so dangerous.” And I’m like, “I’ve literally had serotonin syndrome because of a medicine that I was prescribed, and then also the doctor didn’t recognize the serotonin syndrome because it wasn’t on the monograph. How am I supposed to believe that this is more dangerous?” It is dangerous.
Alex: All of this is dangerous, and like, why is this not an acceptable informed risk that I can take? Why is it perceived as so much riskier? It’s really interesting because there’s this case from, I think the 1400s in France, and it’s this woman called Jacqueline Felicie. She was one of the first trials of unlicensed practice of medicine, and so she was a woman who was obviously very well educated because she was reading and using the same texts that these among the first professional academically educated doctors were using. She was using the same treatments so therefore was obviously reading the same texts as them, was often actually having better outcomes. And so she was prosecuted for the unlicensed practice of medicine, and it’s thought that it was in part because she was threatening their professional investment because she was having better success rates than they were. And quackery is a thing that existed, but the equation of self and community and lay medicine with quackery, with risk, it was about protecting these men’s professional investments. And it was all white men because those were, as you said, the only ones who were allowed into the medical schools, and it was all about, in the early emergence of capitalism, protecting their professional investment.
Brianne: Yeah. There are so many things that I know that we can talk about for a very long time, but like, it’s so weird how… so this is super like, Anglocentric, but the distinction between midwives and doctors historically, I know that it’s kind of changed now, was like, midwives are in the community. They’re probably more affordable. They’re probably bartering. And then doctors are like, a gentlemen profession who have gone to like, abstractly discuss their ideas for a few years instead of apprenticing, typically, or like you’ll apprentice after. And then be like, “Okay, cool. I know everything I need to know, and also I don’t get my hands dirty.” It’s just an entirely different way of approaching somebody’s body, and one of them is like, a lot more about knowing that they’re a person than the other one.
Alex: That’s exactly how you get medically invisible illness, right? Cause when your entire practice is about mapping the physical issues, the physical lesions or whatever of the body, all of a sudden you lose all the things that can’t be mapped.
Alex: And that doesn’t even mean that there is nothing to be mapped, but it means that they haven’t been mapped yet.
Alex: And there’s like no impetus to map them because all your concern is mapping.
Alex: If you can’t connect it to the physical site in the body, suddenly it’s psychosomatic, it’s moral, it’s willpower.
Brianne: And it’s not that guy’s problem anymore.
Alex: Exactly. It’s either, “Fix it yourself. Improve your life. Stop thinking about your body so much,” or “Let’s refer you to a psychiatrist.” One or the other.
Brianne: I love it here. I have one more question that I think I might have actually skipped over. When did you find out you were hypermobile? When was that identified for you?
Alex: Yeah, it was when this doctor who is hypermobile reached out to me, and I think I may have said “No, I don’t think I’m hypermobile,” to her, and I think she was the one who was like, “Yeah, no hypermobility doesn’t mean what you think it means.” And it was at that point…
Brianne: “Okay. But have you checked?”
Alex: Yeah, exactly. I think she sent me or mentioned to me the Beighton score, and I saw the thing with the knees. And I have always had backwards knees. I’m the kind of person that someone would take a picture and like, post on Reddit being like, “What the fuck is with this person’s knees?” My ex really liked Mass Effect effect, and I wasn’t into Mass Effect yet at that point. I wasn’t into video games when we were going out, but he really liked the character Tali. And said that part of the reason he liked the character Tali was because she was… I don’t know if you know about Mass Effect.
Brianne: Not enough.
Alex: Okay. There’s a race called the Quarians, and they have to wear environmental suits because they had to escape their home planet and they’re allergic to the air everywhere else. So they have to wear environmental suits, and also, their legs bend backwards. So he liked the character Tali cause she reminded him of me, and in hindsight I’m like, “Oh yeah. I mean, maybe we should have connected some dots there.”
Brianne: You’re like, “That is actually very accurate in ways that I would not have understood at that time.”
Alex: Yeah. So anyway, so the knees thing, and I was like, “Oh fuck.” This is the very first thing I started complaining about that got dismissed by doctors was, I learned left from right when I was about four because my left knee was the one that always hurt. Then my right knee started hurting too when I was around seven or eight. I remember that I was around eight, and I remember very specifically complaining to my parents and my doctors that it felt like my knee caps were popping out of place. That was just growing pains.
Brianne: “As a euphemism, it feels like what I imagined it would feel like if this actually happened.”
Alex: Yeah. And then I was like, “Oh, they actually were cool.” And then I started realizing, I was like, “Oh wait. My shoulder sort of like clunking, and that it feels like it’s in the wrong spot. It actually is.” I remember I was following, I think it was Ace Ratcliff. It was one of the first EDS people I followed. I remembered them talking about how like, their fingers dislocate multiple times a day and how like, they can’t peel an orange. And I was like, “Oh, wow, that must suck. Like, I’m not that bad.” No, I was that bad.
Brianne: That’s the worst part, I think. If you come here into this specific way, which a lot of us do, where you’re like, “I realized I was sick. I like, become a part of the disability community. I’m like, identifying with certain parts of my experience, and I’m reading these other experiences like, “That sounds terrible.” Subluxations and dislocations, I think are like, I mean… of course for hypermobility, like the most common, but it’s like, I feel like I was reading people talking about subluxations for years then it wasn’t until I dislocated my shoulder this March that I was like, “Oh.”
Alex: Yeah, I was still sort of learning what it felt like and what it meant. I’d accepted the fact that I was hypermobile, wasn’t diagnosed yet. Someone who I knew through an illness group donated a shitty transfer chair to me. Cause I’d sort of like… I was sort of like jokingly talking about like, “God, I wish I had a chair.” And they’re like, “Wait, do you like, mean it?”
Brianne: Yeah, “Do you really want one?”
Alex: Yeah. They worked for a vendor, so they donated this free one to me. And it was really great in the way that it helped me to learn that I could benefit from a chair, but also it was terrible for my shoulders because it was 35 pounds. It was a folding frame, so it was not… you know, it had terrible suspension, and the wheels were too far back, you know, it was just bad. I got accepted to a conference on… I think it was chronic pain, actually. I was still sort of doing like, some conference presentations here and there, hoping maybe I could do a PhD eventually. And my parents, as a Christmas present, they were like, “Okay, fine, go and visit your friends in the UK.” And so I took my chair, and I was like wheeling around London. And like, I remember I was like, almost crying, and I do not cry. I’m not a crier. Not as a bragging thing. Like, it actually causes problems in like, medical spaces. I’ll be like, “I’m in level 10 pain.” And I’m like, not crying. I’m just like stone faced. I was almost feeling ready to cry because of how badly my shoulder hurt, and I spent the entire week wheeling around London like this, and then I got home. And it was still really bad. And then someone in one of the EDS groups that I joined on Facebook was talking about how to reset your shoulder. And I was like, “I wonder, maybe I should try this. Maybe that’s what’s going on.” And then I managed to reduce my shoulder and this massive clunk. And I was like, “I’ve been wheeling around with a dislocated shoulder for a week and a half?”
Brianne: Yeah, mine was out for a week, and I didn’t realize until it popped back in, not on purpose. And I was like, “Oh my God, what are you doing?”
Alex: Yeah. And the thing was, it hurt horrifically when I’d do anything, but it wasn’t actually the dislocation. It was the muscle seizing up. My dislocations themselves don’t really hurt. They’re uncomfortable. I’ve used the metaphor of the pebble in your shoe, but it literally, I feel like I’ve got a pebble in my joint. Like, something’s grinding there that shouldn’t be, and now I know what that feeling means. Back then I didn’t know what that meant. It was like, “Oh, I’ve just got that weird pebble feeling.”
Brianne: And if you tell a doctor that you have roving joint pain, they’re like, “Cool, you have an inflammatory problem.” Not, “All of your joints are bad.” They’re like, “Either you have one bad joint or you have an inflammatory problem. If you have all bad joints, it’s not a joint problem.” And you’re like, “Oh, that’s comforting. Ha ha ha.”
Alex: Occasionally I would convince someone that maybe like, let’s just rule something out, and they’d test me for like, C-reactive protein and like, maybe ANA just to check for lupus one more time.
Brianne: Yeah. Or rheumatoid factor.
Alex: Yeah. Yeah. And those will come back negative. And then, this is a whole other conversation, but like, the fact that you’ll say there’s something wrong, they’ll test the most common, obvious thing. It comes back negative and that’s just the end of the road.
Alex: And then they wonder why people are disappointed when their tests come back negative. It’s like, maybe because they know that that’s the end of the road, and they’re not going to get any more prospect of help.
Brianne: Yeah. Cause it never means, “Let’s ask other questions.” It always means, “So your question is answered,” and you’re like, “To be clear my question wasn’t, ‘Do I have arthritis?'”
Alex: “It was, ‘What wrong with me?'”
Brianne: Yeah, “What is wrong with me?” So by answering the question, “Do I have arthritis?” with, “No,” that’s all we’ve answered. Yeah.
Alex: Yeah, but anyway, yeah, with the pain… so like, for me, the dislocation itself doesn’t hurt, but what hurts is my muscles seized up to protect the joint. My muscles are being like, overly helpful, but actually really ineffectual because they’re like, “Oh, we’re going to help,” and they seize up. And then they just clunk it out again. And I’m like, “Why did you do that? Please stop helping.”
Brianne: “You’re not holding it right.”
Alex: It’s like when my dog is being uselessly helpful too, I’m like, “You’re not helping in the way that you think you are.”
Brianne: Yeah. Now a couple of months ago, I started PT here for hypermobility, and I have now just like, back exercises and very slowly, I’m realizing that I haven’t been taping or bracing my shoulder as much, and my shoulder has been a problem for years and years and years. And I’m like, “Oh, I’ve been seized for years and years and years, and I’ve just been holding it in the wrong place.” And I had no idea why my shoulder was just hangy all the time, but it’s like, addressable a little. I still have a problem.
Alex: This is one of my other self-treatment things, and honestly, this is my most witchy, non-empirical thing. I was like, going to the local herb farm and just buying some plants for myself when I was getting ready to move to my new place, and they had a plant called maral root. And they mentioned that it’s used to help with muscle endurance in athletes in Siberia. I just had a hunch. This is the most non-scientific, whatever. Like, once again, “Hi doctors. I am obviously a hypochondriac.”
Alex: But I was like, “Hmm.” And so I bought this herb, but it’s… you use the root, and it’s like, a pain in the ass to harvest. So instead I just ordered some of the powdered root, and I started taking it. Cause this is the thing, I would get to a point like, when I was doing any kind of physical exertion, whether it’s deliberate exercise or… I was actively allergic to exercise for one thing. This was a whole other thing in my life. They’d tell me to exercise, and I would manage to stick to it for a couple of weeks. And I’d always feel like I had the flu after. I would be sneezing. I’d have the runs. I’d feel like I was running a fever. It turns out, mast cells? Triggered by exercise. But I also, you know, that lactic acid feeling in your muscles? That burning feeling that builds up? I’d hit that within like, five or 10 minutes, and then it just wouldn’t go away. It just wouldn’t dissipate at all. I suspect there’s something with lactic acid metabolism, and like, a lot of people with ME/CFS have been looking at that too, like mitochondrial issues.
Brianne: That sounds so much like an ME thing, yeah. Which is kind of a specious…
Alex: There’s so much overlap.
Brianne: Yeah. But anyway, the research is happening under that umbrella is the best way to think about it.
Alex: Exactly. Yeah. And so I’d sort of had this hunch that there was like, a lactic acid issue just because of that sensation. And I was like, “Hmm.” They use it to improve like, oxygen metabolism, and then sure enough, I took it. And like, the next day, again, this is like, it sounds fake cause I’m like, “The next day I was better,” but like, I was wheeling up a hill, I started to feel the burn, and I stopped for 10 seconds, and the burn faded away.
Brianne: As it is supposed to.
Alex: And I was like, “What?”
Alex: We wheel like, on average five kilometers a day now. And like, I have literally never able to exercise in my life. And Like, the runner’s high, like, the first time I felt that I was like, ” This feels really good. This is why people like exercising. Oh, I get it now.”
Brianne: “It does feel good.” Yeah.
Alex: “I like exercising. Who knew?” I’m not just like, lazy, and like, trying to put it off and like, no pain, no gain, and I’m just a wimp. No, actually it feels completely different.
Brianne: I think that’s also like, one of those clarifying moments about invisibility and also when things work really quickly, is that you look back, and you’re like, “Oh, nobody believed me because things weren’t working the way that they were supposed to be.” Like, “That was also a defining feature.” and then you get to this point, and you’re like, “Oh yeah, no, they had no idea. Like, I had no idea. I assumed everyone’s embodied experience was similar and I was handling it poorly, and they had no idea, and so they were treating me like I was responding poorly, and that’s what made it invisible.
Alex: Exactly. It’s yeah. There’s just this assumption… Like, when we see discourse about like, healthy versus unhealthy food on Twitter, I’m like, this is super gross and TMI, but like, I can eat quinoa and vegetables. Like, I’ll make myself a really nice salad, and the next morning I will have a really nice salad in my toilet bowl.
Brianne: It’s not doing what it’s supposed to be doing.
Alex: Pristine in the toilet, really difficult to flush. And I’m like, “You can’t tell me that things are universally healthy or unhealthy.”
Brianne: And like, that I’m getting the nutrition from this meal.
Alex: Right? And it’s the same with exercise. if your body’s working properly, exercise will help. And this is the thing, now that I exercise regularly, my pain levels are at the lowest they’ve ever been. Like, I am in so much less pain consistently, but I had to get to a point where the exercise was not actively making me sicker.
Brianne: It can cause harm. We look at… not, we, we don’t, but the culture looks at exercise as like, neutral at worst. It’ll either help or it will be neutral, and that is a very dangerous perspective, as we know.
Alex: Yeah, yeah.
Brianne: So you realize your shoulder had been dislocating. Have you to a doctor to ask about hypermobility yet? Or is that something that you do in this?
Alex: At that point, I think I was waiting on the referral to the EDS clinic. When I got the referral to EDS clinic, they begrudgingly diagnosed me with hypermobile spectrum disorder, which is still… on paper, from the most official people who are most entitled to name these things in this province, officially, I have hypermobile spectrum disorder. All of my other doctors just go ahead and call it hEDS. So I call it hEDS. I’m like, “Fuck it. You know what? I have at least three other MDs calling it that. No one else understands HSD. That clinic was awful. I have hEDS fine. Whatever.” I’d sort of recognized it slightly before I went to the appointment. I got the official diagnosis, whatever it was, like a couple months later. I think it was later that year, and then the mast cell and the POTS sort of followed from that all sort of within the span of a year. Finally, all the answers came together.
Brianne: Magically. All on their own.
Alex: It’s really funny too, because… so predictably, when I first brought the possibility of EDS to my family, doctor, you know what the response was.
Brianne: That’s really rare.”
Alex: “It’s very, very rare. No one has that.” Yeah, exactly. And it’s also really funny cause I remember I’d been in the ER that summer cause I was having chest pains after I’d started on another stimulant for my narcolepsy. This was around the time I was starting to learn about it. I didn’t think I had it yet, but I knew some people who had it. And I remember we were sitting in the gurney with the curtain around it and the ER doc was in the next one talking to a kid who’d had a laceration. The mother was explaining that he had Ehlers-Danlos and the doctor was like, what’s that? And I remember I was sitting there and I was like, “I want to say it. I want to say it. I want to say it.”
Brianne: “I know, pick me.”
Alex: But anyway, so then I brought it to my family doctor, and she was like, “It’s incredibly rare. I think we only have one other person.” I was like, “I know who that is. It’s that kid from the other month.” And then it was really funny cause I was talking to her… I had a tele-health appointment with her last month, and she’s got four or five other patients with EDS.
Brianne: Mysteriously. Yeah. You’ve talked about this in general a bunch of times, but it’s like, so interesting how they also flag what makes something worth looking into. Doctors have seen nobody, so they think it means nothing. And then they see one and then they like… or have learned about it, so they have like, the template patient and then their one patient and they’re like, “Oh, okay. This is the shape of this disease.” And it’s like… it probably isn’t. The only reason that I got referred to a geneticist is because I’m tall and my neurologist… my neurologist, I like. This is not really about him, but like, the thing that he kept saying out loud as he was like, “Yeah, we should rule this out,” was like, “because you might have Marfan syndrome because you’re tall.” And I like, don’t really have Marfan’s characteristics, but I am tall. And like, it’s kind of like vascular EDS only, obviously vascular less well known, but they’re like, “Oh, that one has complications that we know that we want to watch out for, so we should rule it out.” Vascular EDS and Marfan syndrome both get that response, but like, hypermobility spectrum/hEDS are like, would we diagnose it?” You’re like, “Oh, I don’t know, because it’s in the same family of disorders, and we’re probably going to find a lot of really serious complications down the road. And if we already know what the patient population is, then we’ll have the patient population already. Like, a million reasons. I don’t know.”
Alex: I also know a couple people, even with vEDS who’ve had that question asked, and they’re like, “Well, it’s fatal and incurable. Why would you want to know you have it?” And it’s like, “Because if I go to the ER and I’m like, ‘You need to image my chest right away,’ they will. Yes, it’s potentially fatal. It’s less potentially fatal if I can get the right treatment very quickly, which is kind of imperative.”
Brianne: Yeah, like, “If I know about it.”
Alex: Yeah. When you’ve got like, an aortic dissection, you kind of want to get the right treatment fast. It’s kind of like, the big thing that determines whether it’s going to work or not. And that’s kind of dependent on having a diagnosis.
Brianne: Like, as we more about like, and this is so relevant to the ME structural stuff, it’s like, “Oh, okay.” And we’re learning a ton of other comorbidities that were like, never seen as that before, and guess what, if you don’t have an EDS diagnosis, no doctor is going to screen you for like, CCI, for outlet syndrome, for whatever it is, tethered cord. You’re not going to get randomly screened for that, so all of a sudden we have this huge problem. It’s a huge bottleneck where people can’t get screened for complications because no one will ever diagnose them. I know a lot of people know that. Now I’m in such a Twitter bubble from the year that we’ve all had. This whole batch of episodes. I think I say this in another episode. This whole batch of episodes is going to be so weird because there’s been a very intense Twitter conversation happening all the time, and if you’re a listener who happens not to be aware of it, you might notice it like shift in tone. Not that it’s different show, but just like it’s been immersive. It’s been an immersive year. So you have HSD/hEDS, and I’ve definitely talked about this distinction before, so we don’t need to talk about what that means… “distinction,” I said with air quotes. Okay. Cool. So you got to that point, blah, blah, blah. Over the course of it, we’ve been out of order a bunch of times, which is totally fine, but let’s imagine, you’re at your parents’ house. You’re starting to get some stability. You have some names. We’re so close to the present, really. Tell me more.
Alex: Alright. Yeah. So, I mean, at that point it was really… I needed to find a way just to afford moving into my own space, and I mean, this was a struggle. I was also… by this point, I was able to apply for ODSP and get ODSP and have slightly more money, not really enough to live on, but like, slightly more, enough to occasionally buy medications and things.
Brianne: Important things.
Alex: While also still having to live with my parents because. I couldn’t afford rent in a real place. So I applied to like, social housing. This is the most “social model” my disabled experience has ever come. Like, this is the most relevant the social model has ever been to me. The wait list for social housing… I got on the priority waitlist because of the issues that were going on at home and because for my mental health, I desperately needed to get out. So I got on the priority waitlist, which was at least three years. The priority waitlist, for people who desperately needed to get out of their living situation because it’s unsafe for them. The regular waitlist was upwards of 10 years. And I remember I was like, emailing them cause I was asking… I think there was like, one space that I was like, thinking of applying to, but it wasn’t ideal. And I was like, “If I get this and then decline it, is that gonna bump me down the waitlist?” And they’re like, “Don’t even worry about that. We just approved someone who’s been on since 2001.” And I was like, “Okay, that’s great.”
Alex: Yeah. I was looking at house share situations in Toronto instead, and this is the thing, like, none of those are accessible. They’re all like in old houses on the second floor. And I was like…
Brianne: Yeah, Toronto… everything… There’s high-rises that are maybe elevator accessible, but there aren’t a ton, and most of them are condos, which are super expensive, and everything else is stairs. And every bathroom in a public business is in the basement.
Alex: Yeah. It’s so great. And I remember I was looking on the Toronto Life, “How to Find a Place to Rent Affordably for Millennials,” and they were like, “Look at older walk-up buildings because they’re cheaper.” And I was like, “Thanks. That helps.”
Brianne: Yeah. cheapest apartment in Toronto was a basement apartment that didn’t have a window in the living room, which is illegal for egress reasons… well, it doesn’t need one in the living room. There weren’t any. There was like a tiny one in the bedroom that I could not have fit out of. That’s what makes it illegal. But you’re like, “Great. I want to live in this environment as a person who realizes that my body has a lot of very specific needs.”
Alex: Yeah. It’s great. I also was able to apply for something called the portable housing benefit, which is also for people who are on the priority waitlist, who very much need to get out of their living situation. And the idea is it tops up, whatever you get from your benefits, it tops you up in order to be able to get a place on market rent. But the thing was too, they couldn’t tell me how they calculate it. So I had no idea, and they’re like, “Well, we can’t tell you exactly.” And I was like, “Well how do I know if I can find a place? I don’t know how much you’re going to cover me for. I don’t know if any of the places I’m looking at are even vaguely reasonable.” And they like, couldn’t give me an answer.
Brianne: Is it like, it wouldn’t be determined until you filed your taxes and it was determined for you?
Alex: It wasn’t even that cause like my taxes… I wasn’t even earning money. The best they could tell me is, it depends on the region you’re in, the specific rent of the apartment, and your income.
Brianne: “It’s a mystery formula that we can’t tell you.”
Alex: Yeah, they also couldn’t tell me how any of those three things were actually related in a way that I could calculate it. So I actually… I went on that, and then I declined it for awhile, and I was like, “I’m just going to try and save up money for a couple years. Maybe I can save up enough for a down payment on a condo in like, fucking Elliot Lake or something.”
Brianne: Yes! Just for context for everyone else, Elliot Lake is the retirement capital of North… of, not North America, that would be a big lie! Of Northern Ontario.
Alex: With slightly elevated background radiation levels because of the older uranium mine.
Brianne: One of my favorite things that I once knew about Elliot Lake is that like, because it’s the retirement capital of northern Ontario, they have a really active senior population that like does like, citizen on patrol, like, neighborhood watch stuff.
Brianne: This is really out of date Elliot Lake information. I just want you to know, but that’s my favorite Elliot Lake fact. I’m sorry, everyone listening. Most of you will not have Elliot Lake facts.
Alex: Extremely specific Northern Ontario knowledge. Yeah. So I was like, “That’s like, the only place in Ontario you can get a condo for like, less than 50,000.” And I was like, “Maybe I can like, hang in here for like, two or three more years, not spend money on anything else, just save up my ODSP checks.” But like, things were getting really bad at home. So I went back on the portable housing benefit. I finally got them to agree… I was like, “If I send you a list of apartments, can you estimate what I would get for that?” So I sent them like, five apartments from every city in Ontario, and I figured out roughly which city I could get the best balance between the benefit and like, the average rent for a reasonably accessible one bedroom. I say, reasonably accessible… with an elevator. That’s literally all I’m looking for here. This is the thing too. It’s always… I love it here. Like, people’ll be like, “So what led you to decide to move to Kingston?” And I’m like, “Well, I looked at every metropolitan area in Ontario, and I compared the average rent for a one bedroom in a building with an elevator with the amount that I could get in that city on the portable housing benefit, and Kingston had the smallest discrepancy.” And they’re like…
Brianne: “Sounds fun.”
Alex: Oh, it’s like… conversation killer right there.
Brianne: Yeah. My situation is not the same, but kind of the same, which is that I was like, “I need to live somewhere that’s mold-free, and I need to live in a housing market that allows me to do a proper mold screen, and that ruled out every city on this continent. So here I am.
Alex: Yeah. It’s like, very… I love it. They’re expecting me to be like, “Oh, I have friends here,” or, “Oh, it’s a really pretty city.” And I’m like, “Nope, Nope, literally just… smallest gap between I could afford and what I could get.”
Brianne: “You were doing something right, Kingston. You just didn’t know it.”
Alex: Yeah. And it’s funny too, cause it’s not even like the rent here is particularly low. I think it’s skewed because of the way they calculate average rent for one bedrooms. Cause the thing is Toronto has a lot of like, basement units and like, house shares, which artificially dragged down the calculated average market rent in comparison to like what I actually needed, whereas Kingston.
Brianne: There’s probably just not that tier… or that tier of housing is much smaller.
Alex: Yeah, exactly. So it just wasn’t skewed as much. I moved here, and yeah. And so like, around two and a half or so years ago, too, I also started working again in a very chronically ill, disabled way. I’m working with another chronically ill person, Liz Jackson. We met each other through Twitter. We both followed each other and then sort of discovered how aligned we were in the kinds of work that we wanted to be doing. Liz had a little bit of funding that she’d been able to secure. And so we started working together, and like, I sort of wasn’t able to work very effectively until I left my parents’ house and was in an environment where my mental health was a little more stable. But yeah, that’s like… that’s sort of where we’re at now. Like, I moved here. I use a wheelchair so I can actually get to the grocery store, which is rad. It’s nice being able to like, buy groceries
Brianne: This is when you’re like, “Ah yes. It is nice to have independence through accommodations. I understand that model completely right now.”
Alex: At the same time I wasn’t very confident with my chair, and I also hadn’t quite put together the muscle fatigue exercise thing yet. I wasn’t using my chair frequently enough. I still… even up to last year, I used my wheelchair like, maybe 25% of the time when I absolutely could not do the thing without using it. So like groceries, because I physically cannot carry groceries that far without bad things happening. So I would use the chair for that. But like, when I was walking the dog, like, “Technically I don’t need it to walk the dog. I can walk like, a kilometer without my chair. And yes, it hurts. And yes, I get annoyed at her for stopping to sniff because I’m starting to get dizzy, and I will have a panic attack when someone comes up to say hi, cause I don’t know how long they’re going to keep talking and I might pass out. But like, technically I can walk.” I wasn’t using it enough, and I hadn’t built up the arm strength. So then when winter came, I just didn’t go out. Winter is awful cause like, slippery surfaces and hypermobility do not go well together. And so like, when COVID rolled around, like, it’s literally really just as though my winter has lasted for 11 months now because nothing changed. When lockdown started, I’d been ordering groceries. I’d, at most, been going a block from my house with the dog because I couldn’t walk on the snow. So like, really literally nothing changed when lockout started in March. It was just like winter kept going for me, but at the same time, I started realizing I couldn’t take her to the dog park anymore. So I was like, “Okay, I’m going to start using my chair so we can go farther.” And then I was like, “Oh, everything hurts so much less now. Maybe I should just use this all the time. Wild.” And then, so like, we started… they built a bike trail just behind here last year. And I was like, “Oh, let’s try using it.” And we went like, farther than we’d ever gone. And like, my shoulders were killing me, but I pushed through and like, you know, the delayed onset pain. I’d never really tried to push through that before, but I actually, before when I tried to push through it, it would just get worse and worse and worse over the course of days. So it never seemed meaningful, but this time I like, pushed through it and got through it. Three days later, I was like, “Oh. now it’s not hurting to do this route again.” It’s like, you do the same thing over and over again, and it stops hurting as much, which apparently is also how exercise is supposed to work for normal bodies.
Brianne: And they’re like, “No pain, no gain.” And you’re like, “Oh, okay. Yeah.” And meanwhile, you’re like, “I’ve just been dislocating my shoulder weights. Is that what you meant?”
Alex: Yeah. I’m like, “Oh, the pain doesn’t keep getting worse and worse. It eventually stops. Okay.” So now we just, yeah… we did 12 kilometers the other day, which was like… I’m so proud of. We went all around the city. It was amazing, and it’s good now. It’s just so weird to have very basic things in your life work the way you’ve always heard they’re supposed to work.
Brianne: Yeah. Especially cause it’s like, at the beginning, it’s like, “It’s weird that people always say that because it is not match my experience, and so I don’t know why they keep repeating it.” And then eventually you’re like, “Oh, it did match their experience.” And then eventually you’re like, “And I can find an adapted… like an alternative.” There’s three different steps to realizing that, in fact, wasn’t meant to be as terrible as it has been for most of your life.
Alex: Yeah. And also like, the fact that I was finding it terrible didn’t just mean that I’m like, a giant wimp, apparently. Like, actually no, the things I’m experiencing would make most of these, “No pain, no gain,” exercise people cry.
Brianne: Yeah, they would not be like, “Oh yeah, this is nothing. Push through it.” They’d be like, “This should have medical attention.” You’re like, “Interesting. Interesting.” Yeah, it’s wild. This is another beef thing. When people are like, you know, “Sick people who just want to get some stability actually want to get better and not be disabled anymore.” This is literally the distinction that you described. You’re like, “No, I just want to live in the world where things work the way that they’re supposed to, but it was not clear to me how to create that world for a really long time.”
Alex: Yeah, this is… so I’ve also now gotten a shoulder brace. And it’s really funny, cause it’s a whole other thing. I’m like, realizing that when I wear it and when I wheel and when I walk, I’m like, using completely different muscle groups. When I was a kid, I used to be like, “I wish I could get it back brace,” which again, really weird thing for a kid to wish for. Like normally that’s not, your dream as a kid. And they’d say, “Well, no, it’s just a muscular problem. What you need is exercise.” But the thing is, when all of your muscles and joints are like, hanging and falling all over the place and your muscles are trying to do the work of holding your joints together… it’s very hard to focus on activating a particular muscle group, when everything else is wrong. And so now I’m realizing when my shoulder’s anchored in place, I use my abs, which are like… my abs are very sad, like nonexistent, but now I’m starting to use them. And this is part of also why walking is so hard for me because when you have nonexistent abs, walking is really hard on your back. Now, when I wear my shoulder brace in my chair, it’s like, an ab workout, and I’m just so looking forward to the moment when I can go into my doctor’s office and walk like, completely stably, not because I want to walk and not because I’m going to stop using my chair, but just so I can be like, “Do you know why I’m walking? It’s because of my chair and my shoulder brace.” I just want to rub it in their faces literally, and then I’m going to go back and get the chair.
Brianne: Another thing that’s really difficult about talking about dynamic mobility like this, is that so much of our language around… mobility disability? Yeah. Those are the right words together… was developed by scholars who were paralyzed and it’s like, “Hey, that’s cool. That’s just like an, in every way, different experience.” Everything about it, basically.
Alex: Yeah. Well, this is like the whole social model too. Like, this is… we are going to get flamed so hard on disability Twitter for this, but the social model was developed by people who were paralyzed and I think, who had muscular dystrophy, medically visible disabilities. And that’s not to say that what they created in that model is invalid. It described their experiences very well. It was never developed to describe the experiences of people with medically invisible disabilities. We talk about the medical model and how under the gaze of the medical model the outcome is to cure disability. And I’m like, “Not if you’re medically invisibly disabled.” They have never wanted to cure because to desire cure for me would be to acknowledge I was disabled in the first place. It’s just a whole part of the history that’s missing. We talk about the history of disability, and we talk about freak shows. We talk about clinical photographs and like, the grand rounds parades that they would be subjected to as kids. That’s not my history. My history is Colin in The Secret Garden who miraculously was able to walk once he got fresh air.
Brianne: Probably literally, frankly. One of the things that I find so hard when talking about mobility is like, my mobility fluctuates so much, and so when I can walk, I do feel like that’s a good thing. Not because I think that walking as a form of mobility is superior, but because when my body specifically has the capacity to walk, it also has the capacity to think and itself and water itself and get to the bathroom. My mobility issue is not a mobility issue. It’s like, mostly an autonomic nervous system issue. Sometimes people are like, “Talking about walking as like, it’s good is like, shaming people.” And I’m like, “Okay. One, I would never like do a standalone tweet that was like, ‘Walking is great,’ because I don’t think that or ever want to perpetuate it in any way.” but just being like, “I’m having a great day,” or like, sometimes you wake up and you’re like, “I haven’t used my mobility aid in a while,” or whatever… I don’t think I’m cured. I don’t think I’m better off not needing it. I’m just like, “Huh. My nervous system must be really happy right now. And that is worth celebrating.” There’s this like, cultural barrier sometimes in… it’s a little bit inter- a little bit intra- where you’re like, “Hey, I’m not saying that not walking is bad. I’m saying that having an autonomic nervous system that shuts down every single one of your systems is pretty uncomfortable. We’re just having different conversations right now.” I think like, anybody who’s listening who’s not on disability Twitter is going to be like, “You guys have a lot of strong energy about this issue that I have never considered before.”
Alex: This is really niche.
Brianne: These are themes that come up a lot and like, pushback that comes up a lot. And you’re like, “Okay, I’m really interrogating it. I want to interrogate my own ableism a lot. I’m sure there’s a lot I haven’t found yet, but like, I feel very confident that that’s not what this thing is about.”
Alex: Exactly. Yeah. If you associate a particular activity or mode of mobility with feeling better, then of course you’re going to have positive associations with that.
Brianne: Yeah. Dysautonomia is so great in this way, too because it’s like, so visible when you know what to look for, but so invisible diagnostically, clearly, since it’s like… it boggles my mind. Like, so many people now are still not getting screened for it when there’s no… I mean, maybe that’ll change because of long COVID. But like, it’s so invisible, and as soon as you know about it, it’s visible. And then you can be like, “Oh cool. I’m tracking it. I’m making different choices. I’m keeping my body in different postures.” A whole world opens up where you’re like, “Oh, cool. I completely see this outside of the walking/not walking binary now, but I never had the tools or language to observe and evaluate that before, so here we are.”
Alex: But like, when we think about like, what assistive technology is too… talking about different postures, I spend most of my time on the couch or the bed because it’s just easier even than sitting upright and for a variety of reasons. There’s postural, there’s also, my abs are still not great, so my hips and my back start to hurt if I’m sitting upright at a desk for ages. I get circulation issues in my feet, and then they start to go numb, like, just a lot of stuff. I’m either reclining on my couch where I can sort of lean or in my bed. And so for me, like, assistive technology is like, my over bed table and my laptop, and those are not things that ever really get counted. And this is going back to like, the design conversation, too. Like, those are not things that get consider as assistive technologies. When people are evaluating digital accessibility, UX, they talk about assistive tech in terms of like, screen readers and speech to text. And I’m like, “Have you considered how a laptop and a track pad are assistive tech, too?” And like, that’s, again, invisible. Invisible from the conversation.
Brianne: I would say that one of the items that is like, most desired by this community in the assistive tech world is just a way to mount your monitor while you’re lying down.
Alex: Oh my God, yes.
Brianne: This product exists. There’s like a really, really expensive gaming product in this space that makes the rounds every once in a while. It’s so interesting actually to me how this like, tracks beside disability dongle. There is very little difference between a $2,000 gaming chair that you can like, mount a monitor in and a wheelchair that can climb stairs. You’re making this like, luxury product instead of just making something that is good. I dunno, probably some disabled people who have a lot of resources have bought gaming chairs, I bet. But like, if you can’t afford a gaming chair, you’re just hacking together your own system, which is what most people do. But like, there’s no reason this product hasn’t been designed.
Alex: Yeah, I got a really the fancy ski coat this summer, and I got it in July because it occurred to me that if I looked in July, I might be able to get some good discounts and I could. But also like, this is the first time since I was under 18, that I could have had the financial access to something like that. And it has been a game changer in terms of going outside in Canadian November and not being in immense pain, but like, that shit’s expensive. It takes so much privilege to have been able to get a hold of that coat, and most people who are disabled probably still could not. I’m very lucky that I’m now in a position where I’m able to work part-time and able to access benefits that have helped me to do that. But this stuff is so expensive, and know, there’s a conversation around the straws. The plastic straw ban about how reframing something like that as a medical device will lead to increased expenses for people. And that’s absolutely an issue. But then there’s also like, the opposite, which is that coats, laptop stands and gaming chairs are not considered assistive tech devices, so there’s no way to procure any kind of funding or insurance coverage for them. I need my coat as much as I need my wheelchair.
Brianne: Yeah. There’s so many cultural barriers, too. We know this in general in disability, right? Like, if you spend money and you’re impoverished, people are going to be like, “You should never spend money on anything expensive. It doesn’t matter if it makes your life better.” And then there’s like, a pushback being like, “Hey, there’s a crip tax. Things just cost more.” We kind of get that, and there’s discourse around that. And I think part of the work with invisible disability, however we want to frame that in this moment is being like, “Hey, there are a lot of invisible assistive devices that you don’t know are being used that way.” I know I’m basically repeating what you just said, but anyway, they’re being used this way. And so it’s not just, “How do you file them with insurance?” Or whatever. Like, it’s not just about, what are the mechanisms that exist already? It’s also like, how much work has to be done socially to convince the people around you that you actually need that device, which, again, not that it doesn’t happen with devices that are coded as medical. It does happen with devices that are coded as medical, but it is different when it is not coded as medical. And it is an access tool, and people don’t have a context for understanding that. So, yeah, it’s wild cause people in our community for the most part, just want to be able to do everything lying down. That’s an access need, and it’s hard to do a lot of things lying down right now, because as much as people who think about these things are thinking about like, “Wow! We really do design spaces for bipeds, don’t we?” It’s also like, “Oh, we really design spaces for people who can sit don’t we?” We have the weirdest intersection of people who can walk but can’t sit. Then people who use chairs, but like… that must be its own thing, frankly, because sitting in a chair over time when you have orthostatic issues is probably frustrating.
Alex: I do not miss traveling for work, God. Last December, we went to San Francisco, and I got stuck at the Arizona airport for seven hours. And that was like, the worst thing that has ever happened to me. Also, when you have a wheelchair, it’s not like you can just get out of it and lie down and take a nap because obviously you don’t want anyone stealing your chair. I would have gone and laid down on the floor, but I was also like, So I was just sitting for seven hours. It was the worst.
Brianne: That, I believe because the first thing I do whenever I have to wait anywhere is move to the floor so that my feet are effectively elevated and/or lie down, wherever we are, whatever to happen. It’s good. But yeah, we just need more spaces for people to lie down. This is like, one of my top three strong opinions right now.
Alex: Yeah, and also, I would say like, for people to be unconscious safely in public. This is going back to what my narcolepsy was untreated. It’s so scary. Like, I was having a sleep attack… I was in London, and I was staying with a friend who was working. I decided to go to a museum, and I started to feel asleep attack coming on. And I couldn’t… first of all, I couldn’t find anywhere to lie down cause also, hostile architecture. There is nowhere to lie down in London anymore.
Brianne: And which we know is for unhoused people. Like, we understand that both “has nothing to do with us,” in quotes, as if there’s no intersection and a very complicated situation here. And also like, it’s collateral damage that it makes it hostile to disabled people.
Alex: Exactly. I would love to see if there were a way to challenge hostile architecture through like, ADA-type equality act legislation. That’s a thing on the list of things I eventually want to try and do because I think that would be a really interesting way to apply that legislation, and it’s real. Like, it is absolutely an accessibility barrier too.
Brianne: Yeah, cause I’ve had that with syncope. I’ve never fainted from POTS either, but I also have vasovagal syncope. So I just like, I’ve had a lot of public fainting issues, and it’s not set up for that if you’re by yourself and you’re presyncopal, which I’m sure is not that different.
Alex: Yeah, exactly. The key thing is you need to get somewhere you can lie down. I remember I went into a cafe, and I told them. I was like, “I have narcolepsy. I need to doze.” I ordered a coffee, but I was like, “If I’m unconscious, don’t call the cops or an ambulance.” And then I remember I was sort of like dozing and I could hear someone saying, “Oh, it looks like someone had a fun night out.” There’s something so unsafe feeling about being unconscious in public. And like, what are the ways we could design spaces… and, again, would be great from accessibility perspective, but also from unhoused people, and also from people who experience breaks with reality, or people who are dealing with substance issues. Like, they also need to be able to be… people were assuming I was drunk or high. The issue isn’t that they were mistaken. It’s that anyone who is struggling with altered consciousness in public should have a space to be able to be unconscious in public safely, and it just isn’t.
Brianne: I want to say one more thing, which is that one thing that I really hate about it is I’m also like “I’m not going to call a cab like this.” Like, I’m not getting into a car… especially in Toronto where there’s exactly one woman taxi driver. So I’m going to make some gender assumptions, and sorry in this one moment. But like, statistically, you’re almost certainly going to get a man as a cab driver. And like, there are some feelings there when you’re like, “I’m presyncopal, and I…” One, I should be safe even if this were substance, and two, this is frequently mistaken for substance. And like, of these things do not want me to get into a small enclosed space with a strange man.
Brianne: And that’s like, my safe option, to get out of public.
Alex: Yeah, it’s a whole thing. And I mean, that, none of that is ever really talked about in like, access conversations.
Brianne: No, I don’t think I’ve ever heard that.
Alex: Yeah. Like, default assumption is that access includes… you’re conscious.
Brianne: And likely to remain so unless it is an actual medical crisis in which you need care, and it’s like, “Oh no, I don’t need care. I mean, I would probably benefit from hydration, but like…”
Alex: Yeah. I mean, this is the thing too, like, I know folks who deal with seizure disorders and epilepsy too, like also in the States.
Brianne: Don’t call an
Alex: that They get the ambulance called on them, then they’re a thousand dollars in debt. Like, there’s so many dimensions to that lack of safety when you deal with altered consciousness.
Brianne: Yeah. That’s a fun thing. So many memories of lying down on the side of the road, just being like, “I’m not exactly conscious.”
Alex: Oh yeah.
Brianne: My syncope was like, one, fainting is kind of obvious, and two, that’s like, the only thing that was accurately named when I was 18, so when I was pretty young. So like, that’s the only one that I’ve ever been like wandering around spaces, being like, “I have needs. I need to lie down. I need to get away from this disgusting picture the triggered my syncope. Thank you.” Okay. We’ve been talking for about three hours. Is there anything that we have not Is gotten to, that you knew that you wanted to talk about or that like, is fresh on your brain now?
Alex: Not really. I think we actually did pretty much cover everything in a very like, roundabout way, yeah. Which is honestly how my brain works. It’s so nice talking to another person whose brain works that way, because I’ll go on like, normal person podcasts and I’ll be doing this like, “Oh, this also happened 10 years ago, but it’s tangentially related.” It’s just like, a nightmare.
Brianne: Yeah. You’re like, “Do you even know what I’m talking about now? As I am deep into theory?” Yeah. It’s an adventure, I feel like. It’s been fun to be able to be like, “Just talk me about, whatever’s important about the thing.” And it’s like, cool. We can have a way better conversation than when I’m like, “Educate me about your disease and/or work.”
Drew: Thank you for listening to episode 75 of No End In Sight! You can find Alex on Twitter and instagram @alexhaagaard. You can find me on Twitter @fibrofuckboy and if you want to support me directly and are in a position to, I have a Patreon where I post my poetry and other artistic endeavors at patreon.com/darkmagenta. You can find Brianne on Twitter and Instagram @bennessb, and you can find many more conversations about chronic illness on Twitter @RTsFromTheVoid. And don’t forget you can sign up to support the show over at patreon.com/noendinsight. Or, if you want to support the show but don’t have a few bucks to spare, we’d be just as grateful if you left a podcast review on Apple Podcasts. Thanks for listening!