Mugabi Bienkya talks strokes, international healthcare systems, and medical racism.
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 Mugabi Bienkya about strokes, international healthcare systems, and medical racism. Mugabi also talks about his book Dear Philomena, which you can buy here. Some content notes for this episode: There’s some talk of food and appetite at the top of the interview and then again around 55 minutes in. There is discussion of electroshock therapy around 30 minutes in. Mugabi and Brianne discuss religion and faith healing from around the 40 minute mark to around the 55 minute mark. There’s some talk of the Vietnam war, landmines, and the Cambodian genocide around an hour in. As mentioned before, medical racism and colonialism are major themes of this interview, and there is a story of racism at the University of Michigan Hospital starting around an hour and 20 minutes in. The discussion surrounding this story includes a non-reclamatory use of the N-word and a mention of a gun. The bulk of this story should be over by the hour and 25 minute mark. Around an hour and 45 minutes in there is discussion of anti-Blackness from white women specifically, and this includes some conversation about Emmett Till. This story should be over by the hour and 50 minute mark. This episode also includes mentions of addiction stigma, forced tapers, the concept of “drug-seeking” and the ways anti-Blackness ties into these. Those take place at around an hour and 45 minutes in and 2 hours and 10 minutes in. And finally this interview includes a detailed description of suicidal ideation and auditory hallucinations as side effects of medication which goes from around the one hour and 30 minute mark to around the one hour and 40 minute mark. 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’m so excited to be talking. I like to start by asking people, how was your health as a kid?
Mugabi: So as a kid from about zero to nine, I would call myself relatively healthy. I can remember like, two alarming health incidents before nine years old, one being that I had jaundice as a baby. I was born in Nigeria, and it’s fairly common in Nigeria. And so it’s like, an alarming health thing, but at the same time, a fairly common alarming health thing.
Brianne: So like, scary at the time, but not necessarily… like, plenty of people experience it and it doesn’t mean anything further, probably.
Mugabi: Exactly, exactly. Some people end up developing complications from it, but most recover and go on to like, live healthy, able-bodied lives. And I don’t even remember it because I was a baby. So
Brianne: yeah. Right. Of course.
Mugabi: it did not affect me at all. And the other being that I had a tapeworm in my stomach when I was like, six or so. And I just remember that because I remember like, not having any appetite or not really having any desire to really eat food. And my mom was always like, up in my business being like, “Oh, how come you won’t eat?” I was just like, “Let me live my life. I’m not hungry.”
Brianne: Yeah, “This is fine.” And she’s like, “It might not be yet actually.”
Mugabi: Exactly. So she took me to the doctor and got me dewormed, and like, this giant tapeworm came out of me, which I was like just super grossed out about.
Brianne: I bet! You were like, “Bodies! What are they doing?”
Mugabi: It’s very, very creepy cause I don’t even know how it got in there in the first place. It was probably like, while I was playing like, in the dirt with my friends or something. But I remember after the tapeworm got removed, that was the first time that I discovered appetite. I was like, “Wow! So this is what it feels like to be hungry.” Cause I never really felt hungry before that as far as I remembered, because when you’re six, you don’t really have that much of a memory. My first couple of memories are like, four or five and so like, I didn’t really remember much of eating and enjoying food until the tapeworn got removed. And then I was like, “Wow, I’m hungry all the time, and I love food.” And I realized that the reason that I never felt hungry was because this tapeworm was just sitting in my tummy, making me feel full and eating all my food. So after that I put on a lot of weight because I was like, “Oh my God! Food is amazing.”
Brianne: You were like, “This is a very different experience.”
Mugabi: But those are like, the two, which were like, alarming, but not really massive deals. So I became disabled when I was nine years old because when I was nine years old, I had my first stroke.
Brianne: Okay, so between six and nine, you were eating and doing all of these things. And then I imagine as a nine year old, this wasn’t something that you were kind of… either anticipating or knowing how to make sense of. So what… what was that like for you? Do you have a lot of memory now about what happened beforehand or how things unfolded or is it mostly things that you’ve heard repeated back?
Mugabi: I remember it… Memory is one of those funny things where like, I think I remember it, but then again, I’ve also heard the story 1,000,001 times, and I also wrote about the story in my book. And so like, I’m not sure whether it’s like, the memory of what I wrote or the memory of what I’ve heard or the actual memory, but I do have a very…
Brianne: Yeah. You have a timeline that you know about.
Mugabi: Yeah, and I do remember it clearly because like, there are only three times in my life that I have felt what I felt when I had my stroke. And those three times were the three strokes that I’ve had. It’s a very, very distinct feeling, and so I remember what happened. And it was very, very disconcerting because I had no frame of reference whatsoever. I was nine years old. I was just like, playing with my friends.
Brianne: Yeah. And I also don’t know much about the healthcare system in Nigeria. So were you still living there and what happened? Could you add that context as you’re talking, I guess? Basically, tell us a bit about the healthcare system, as you’re telling us about how you discovered this feeling, that… why would a nine year old have any context for? You know what I mean?
Mugabi: So I’m not living in Nigeria. My parents are Ugandan, but my dad used to work for the UNDP. And so before I was born, he got his job.
Brianne: As it happens. Yeah.
Mugabi: And then they assigned him to the Nigeria branch of the UNDP.
Brianne: Oh, gotcha. So when you were nine, I would love to hear about the healthcare system you were also working within because I know they’re so different in every country.
Mugabi: So when I was nine, my family was actually living in Bangladesh. Because the way the UNDP worked at that time was they really worried about people getting a corrupt and getting in a government’s pocket cause it happened a lot. Bribery is a very common practice.
Brianne: They were trying some other things.
Mugabi: Yeah. And so the way that they figured out to like, work around that, is anybody who was like, in a semi… senior-ish position, they moved them to a different country every three or four years, so that you wouldn’t get too comfortable and wouldn’t start taking bribes and getting corrupt.
Brianne: You wouldn’t be compromised.
Mugabi: Exactly. According to their studies, it’s around the fifth year mark, when you like, start getting like, “Oh, I should, you know, start taking a bribe.”
Brianne: Maybe that’s how long it takes for someone to convince you. It’s like, five years is how long it takes a really good corrupter to get into… to get you in their pocket? I don’t know which way that works.
Mugabi: I mean, it makes sense because if you look at like, a lot of political leaders, most of them start off really like, “Oh, I’m in it for the people. I’m going to do my thing.” And then after a couple of years, they become everything that they were like, fighting against.
Brianne: There’s a certain grind to it that really has a predictable outcome on a lot of people. Yeah,
Mugabi: Exactly. So every three or four years they moved us around, so by the time I was nine, we were living in Bangladesh. And the health care system at that time was terrible. Especially for someone like me, who was a child presenting all of these strange symptoms that they didn’t understand. And so they just like… the day that the stroke happened, I was at this… it was one of those like, fairs at the school I went to. They had like, cotton candy and a jumping castle and like, games and stuff.
Brianne: Yeah, like a carnival?
Mugabi: Yeah. Yeah. And so I was just running around with my friends having a blast, and then I remember my mom was there, too. She was hanging out with her friends, just like watching over us, and I remember when we were heading home telling my mom… I remember when the fair was wrapping up I like, started developing this headache, and it’s to this day, tied with the other two strokes as the worst headache that I’ve had in my life. I developed a migraine disorder after that. And so like, this was a very, very distinct like, severity.
Brianne: Like a sudden high migraine.
Mugabi: High intensity. Yeah.
Brianne: And an a sudden onset.
Brianne: Okay. And that would be really scary if you’re a young kid who has never had like, probably that kind of sudden onset pain before it sounds like.
Mugabi: Yeah, cause it felt like sledgehammers were just being pounded into my temple at the same time. It was excruciating. But like, I had a lot of toxic masculinity ingrained into me at that point. My mom used to be a nurse. I don’t know if you’re like once a nurse, forever a nurse cause she still calls herself a nurse even though she hasn’t practiced like, decades.
Brianne: It’s a calling.
Mugabi: But I remember having a couple conversations with her prior about like, the dangers of over-medication, and she was telling me that people tend to like, resort to medication as a quick fix when like, medications shouldn’t be the first line of defense, which is a practical and like, fair thing to say. But like, in my child mind, I was like, “Oh, this means anytime I feel any sort of like, illness, I should just tough it out and not take medication because I’m a man.”
Brianne: Right. Yeah. of course. Yeah.
Mugabi: Yeah. And like, that was a complete misunderstanding of the message that she was trying to communicate to me, but again, I give myself forgiveness cause I was nine years old.
Brianne: Yeah. And it’s like, even if you know now, kind of, what her specific intentions were, I think that general idea or like, toxic masculinity in general is so present that it’s like, you’re kind of primed to interpret all advice as reinforcing that in a lot of ways, and it can be hard to unpack that, especially as a nine-year-old who’s having a really terrible brain situation.
Mugabi: So I was having that terrible migraine and like, it was dreadful, but I was like, “Tough it out. Tough it out. Tough it out.” And then we headed home after the fair, and like, my brothers were like, annoying me as always. And I was just trying to like, get them to shut up by insulting them as always.
Brianne: Yeah. Normal day.
Mugabi: Yeah. And then one of their friends came over and we started playing this board game called carrom, which is like pool, but with these spherical discs that you like, flick with your fingers. It’s really fun. And so they started playing and they needed a fourth player. I had gone to lie down cause I was like, “Let me just take a nap. And like, this will wear off.” And then they like, barge into my room and were like, “We need a fourth player.” And I was like, “Okay.”
Brianne: “This will be the perfect distraction.”
Mugabi: Yeah, because carrom was a lot more fun than trying to take a nap.
Mugabi: Then I remember we were playing, and they started arguing because they were trying to figure out whose turn it was next. And I was keeping track of whose turn it was, and so I tried to tell them it’s Nadine, who was my brother’s friend’s turn. I was like, “It’s Nadine’s turn.” And then they just kept on arguing. And I was like, “It’s Nadine’s turn.” And then they continued arguing. And I was like, “Why aren’t they listening to me? Like, I’ve been telling them whose turn it was. And they’re trying to figure out whose turn it is.” And so I was like, yelling, “It’s Nadine’s turn. It’s Nadine’s turn.” And then they all look at me, and I was like, “Why are they all looking at me with like, weird looks on their faces? What’s going on?” And then I realized that that was my first onset of aphasia where I thought I was speaking, but no sound was coming out of my mouth. The only thing that was coming out of my mouth was like an awkward croaking sound. And then they started freaking out cause they were like, “What’s going on with Mugabi? Why is he making this weird noise? And why is he like, spasming?
Brianne: Yeah, “This isn’t what we would expect him to be up to right now.”
Mugabi: Exactly. So they went and got my mom and like, because she was a nurse, she like, calmed me down, gave me like, some Panadol. Eventually my voice came back. They took me to the hospital, and the doctors there said that I was dehydrated.
Brianne: Okay. Of course. Classic.
Mugabi: And so they hooked me up on an IV and gave me some glucose and were like, “He’s good to go.” And I was like, “Okay.” And then my mom gave me this huge lecture on like, why I shouldn’t be running around with my friends and not drinking water and water is important and dehydration is dangerous.
Brianne: Yeah. “Keep yourself hydrated.”
Mugabi: And I was like, “Okay.”
Brianne: You’re like, “Yeah, this all… of course I… That’s what happened.”
Mugabi: Yeah, because I had no context. So I was like, “This must’ve been dehydration. I didn’t know dehydration could make me not talk.” And then I was like, definitely afraid of dehydration from then on. And I was like, “I need to drink water all the time.”
Brianne: Yeah. Or that it could be this painful. And like, not to make light of dehydration, which is like, very serious for many people. It is just fundamentally not the same thing as a stroke. Yeah.
Mugabi: And then like, I remember everything settling down and then I went back to school. Cause this all happened over a weekend. And I went back to school and like, my claim to fame in school was I was like, the number one in the class in handwriting.
Brianne: Ooh, is fancy.
Mugabi: Yeah, my third grade claim to fame. And I remember like, we were doing a handwriting exercise, and like, you know those cursive handwriting things where it’s like dots and you’re supposed to like trace over it? We were doing one of those, and my hand couldn’t trace within the lines and I was like, “What’s going on? This is very confusing. Handwriting used to be my thing, and now my hand can’t do what it used to do.”
Brianne: Yeah, I’m sure you weren’t thinking in these words at the time, but it’s like, “I have this muscle memory that I am very used to using, and suddenly it’s just gone and that’s not like… holy cow, that’s disconcerting!” Again, I’m sure… your nine-year-old self talking about your muscle memory and then saying, “Holy cow.” But anyway, maybe that’s what you were like.
Mugabi: No, I feel you. And then I went home and my mom’s like, “What’s wrong with your hand?” And I was like, “What do you mean what’s wrong with my hand?” And then she’s like, “Do not see what your hand is doing right now?” And then I looked down and my hand was like, curled up. I’m not sure how to describe this for the sake of audio. And I was also walking with a limp, and my mom was like, “There’s something deeper to this than dehydration,” in her mind immediately. And in her mind immediately, she was like, “I need to get him to who will actually listen to him.” And so she told my dad like, “There’s a serious issue. We need to get Mugabi to a hospital where they’ll actually listen to him,” which I really appreciate.
Brianne: Yeah. And do you know… obviously this was quite a while ago, but do you have a sense of if they were like, “Oh, of course this hospital wasn’t helpful for this reason. And we know how to choose a hospital that’s more likely to be helpful?” I’m just wondering cause I feel like in American healthcare it can definitely feel like that, right? You’re like, “This hospital is terrible for XYZ reason, and this hospital is better. And if we can get in there, this person will probably get better treatment.” Do you happen to know if that was kind of going on at the time? It’s okay if not, this is just my systems-brain wondering.
Mugabi: So I’ve talked to my mom about like, that day since then. Now that I’m an adult, she’ll be honest and open with me.
Mugabi: And she said her and my dad had no idea what they were doing.
Brianne: They were just like, “We’re going to keep trying.”
Mugabi: Yeah, exactly. The internet was like, a new thing by then, and so they were just like, Googling left right and center and trying to figure out… and so they took me to a couple of different hospitals and all of the hospitals had no answers for me. And so then one of the hospitals recommended that like, if we can afford it, “You should take this child outside of the country because we think they’ll do a better job of handling whatever he’s dealing with.” And luckily, my dad worked for the UN, which has an amazing benefits package. Like, I’m still on their health insurance and I’m 29. And my dad died in 2005. I don’t even understand how that’s even possible.
Brianne: You’re like, “This is the world we need to keep building.”
Mugabi: But like, the UN, like every other institution, they signed these ridiculous contracts in the eighties when my dad got his job, but like, the minute the nineties hit and they realized that they were giving out these ridiculously generous benefit packages, they shut it down completely. And so anybody who wasn’t part of that eighties generation signing on does not have the same benefits as I do. I’m always grateful to my mom because she’s the person who talked my dad into getting that job because she was a nurse, and she saw that UN people always had their healthcare bills taken care of. And she was like, “This is amazing. I would love this for myself and my family and my children.” And so the UN like, flew us out to Singapore, on their dime.
Brianne: Yeah. Pretty quickly? I would imagine.
Mugabi: Yeah, pretty quickly. It was within like, a week.
Mugabi: Yeah. And Singapore has like, one of the best healthcare systems in the world, and it was like close-ish to Bangladesh, which is great. And so when I got to Singapore, we did extensive testing, and that’s when they were like, “Your son had a stroke.” And I was there with my dad at the time because I come from a family with five children, and my mom was not about to like, either leave the kids on their own or fly to Singapore for medical care, with four kids in tow.
Brianne: Right. Yeah. Sometimes that’s what parents have to do in an emergency is divide and conquer.
Mugabi: So all of my early medical memories, it was just me and my dad. And that was the first time that I consciously realized the crazy benefits that my dad had because they were telling him about all these procedures that they could run, but they were telling him about how expensive they were. And my dad was like, “Don’t worry about money.”
Mugabi: Like, “The UN will cover it.” And it’s only now that I am aware of the health insurance package, now that I’m like, dealing with my health stuff myself, that I realize it’s like… what do they call it when it’s like, you can spend up to a certain amount?
Brianne: There’s deductible and then there’s… that’s like the first amount that you have to spend in American insurance, and then there’s also out-of-pocket max, which is the most that you could spend, and then there’s lifetime caps, which is like the high end, which I think they made illegal? Those, I don’t remember. There’s something complicated about that, that I am not awake enough to get into, but those are like… at least in US health care cause it’s all private, those… well, because it’s such a mess, that’s kind of how they roll out. But it’s still like… cost is still such a factor in public systems too, since I also grew up in Canada. But people like, have the same kind of barriers of, if you’re in a more rural place that just doesn’t have the technology or it doesn’t have the expertise it’s… as soon as you start to put these stories together, you realize how much luck gets into getting the kind of care that our survival relies on, I think.
Mugabi: Massively, massively. Because like, one of the things that I didn’t realize until relatively recently now that I talked to my mother as an adult, is that the doctors in Singapore told my dad that I wasn’t gonna make it to see 2002, and so that’s something that my dad like, heard, internalized, talked to my mom about, and then went ahead and told me everything was gonna be all right. We’re gonna figure this out. And like, I’m forever grateful to them for that because as a nine year old, I not want to have to deal with the fact that I was not going to make it to see my 10th birthday, you know? But like, I know a lot of situations where that is put upon a child, which is terribly unfair. And it was put upon me as an adult, when I was more capable of handling it, and so I’m forever grateful to them for providing that buffer.
Brianne: Yeah. And you can see that like, that’s not a free emotional thing to have to navigate as a parent. And also like, so many people who get told information like that who survive longer come to realize that like, these numbers are just kind of off the cuff estimates a lot of the time by doctors who are just like, trying to make sense out of a situation. And I’m sure that there’s research on this that I don’t know about, so I won’t over speculate, but I just know enough people who are like… I get it. It’s a probability game, but like, this isn’t a helpful probability game to play for people. It’s our lives. Yeah.
Mugabi: They told me I was going to die twice. The first time was then when, like, I didn’t hear it. My parents buffered it for me. The second time was… I had two more strokes in 2014 when I was in Michigan, and they told me I wasn’t going to make it to see 2016. And so like, for me, that’s just really created a concept of like, my entire life after nine years old, I feel like I’m living… I feel like it’s borrowed time because I feel like… if, you know, you’re assigned the death date by somebody in a position of authority, like a doctor, it’s like, anything after that, you’re like, “I’m still lucky and grateful to be here.”
Brianne: Yeah. Yeah. “How did I get to this part of the multi-verse?” Yeah, so, okay. So that was when you were nine, and it sounds like both pursuing care and then probably treatment took quite a while, right? Like, this must have been an ongoing process after they identified would have happened. Cause there was a… quite a long recovery process, I would guess, whatever recovery even means in the context of disability and chronic illness.
Mugabi: Definitely. Like, it took a semester for me to get back into school again. I had to like, drop out of school for a semester, which… I’m grateful for the fact that I was in the third grade, cause like, no offense to anyone in the third grade, but dropping out for a semester in the third grade and coming back into school in the fourth grade is a lot easier dropping out of a semester for like, college.
Brianne: Right. No, the recovery period is a little bit better. It’s a little gentler.
Mugabi: Like, I moved back into the fourth grade… I’ve always been academically inclined, and like, my teachers got all my homework and stuff to me. And so I would keep up with all my like, class assignments in the hospital bed because it was distracting, and it was a way to like, still feel like I was in some sort of a routine still. Cause like, my dad was working when he wasn’t like, running from test to test with me. And like, he tried to keep me company, but like, at the same time he had to also get his work done. And so like, it helped me to be able to be like, “I’m doing my work too,” rather than like, “I’m just watching TV in the hospital bed.”
Mugabi: For months at a time, you know?
Brianne: I really relate to that from times when I’ve been in bed after injuries or viral infections and stuff. There’s a weird tension about it, of like, one thing about accepting disability is kind of detaching your worth from productivity, and there’s a lot to be said about that, but there’s this other thing when you are in bed and you’ve lost a lot of autonomy and you just want to feel like you’re doing something like… there’s so related. I don’t know. It feels like they’re kind of the same drive, but like, they’re really different emotional experiences. I don’t know. agreeing with me, so I hope that means I made sense.
Mugabi: Yeah. I definitely feel you because I… one thing that I like, try to re-iterate time and time again, especially as of more recently is that like, everybody’s worth more than their work. And like, the whole productivity and work ethic is very ableist in so many ways, but at the same time, because we’re all so ingrained in like, capitalism and productivity and like, school… Everybody I know was in school from 0 to 18, and it trains you to think, and it indoctrinates you in a very, very certain type of way.
Brianne: Yeah. It’s intentional.
Mugabi: Yeah! Unlearning all of that is difficult. And so like, as much as I believe that not everybody should be required to work, especially as hard as a lot of people do, at the same time, you should be able to do things at your own pace and in your own way because there is some sort of like a joy that you get out of being productive to a certain degree.
Brianne: Yeah. Yeah. And like, I don’t know, maybe we need good separating language. It’s like, having purpose or finding… seeking fulfillment, and it could be anything. I think that’s part of it, is that often, especially in late stage capitalism, those are intentionally conflated, the like, “Find your purpose, and also, make it your value.”
Mugabi: Because, like, I don’t mean making money. I mean like, doing something that like, gives you a sense of purpose, as you said.
Brianne: Yeah. Purpose and cognitive stimulation when that is wanted. Yeah. It’s a whole other framework. Okay. Yeah. So you’re recovering, and you’re doing your work while your dad is doing his work, which… I think I’ve said this probably more than one podcast episode, but when I had mono in high school, I studied for the SATs when I was too sick to go to school, and I didn’t need to take the SATs. So I understand completely. It was just like, “Here’s the thing to do that gives you a framework for your day that isn’t watching the same TV show all the time.”
Mugabi: And also hospital TV sucks. Like, we need a lot more selection in terms of like, hospital activities. One of the great things that I benefited from was because I was in the pediatric ward, I was around a bunch of other kids. They had like, a playroom. They had like, activities. They had a bunch of different stuff to stimulate the children, which I don’t understand why they don’t have that for adults cause it’s like, we need it too.
Brianne: Right. You’re also just kind of there. Yeah.
Mugabi: Because I noticed a massive shift in my healthcare when I turned 18, when I was no longer in the pediatrics, and I was like, “This is boring. Like, I was having fun back in the pediatric ward with my friends coloring and like, playing connect four and like, running around the playground.” And like, in the adult ward, it’s just a bunch of people moaning and complaining about life. And it’s like, why don’t adult wards have some sort of like an activity center?
Brianne: Yeah, it doesn’t have to be like this.
Mugabi: Yeah. Why do we treat the kids completely differently than we do the adults? I don’t get it.
Brianne: Yeah. And especially, it’s like… when you’re sick, like, it shouldn’t also be your job to find ways to cheer yourself up. When you’re in a place that’s supposed to be helping you, yeah, it would be nice if they also, in fact, helped you with these other needs that are like, essential part of being a person. I don’t know. I’m just going to get mad about everything. That’s what I feel like this podcast is now.
Mugabi: The healthcare system fails the way too many of us.
Brianne: Yeah. Yeah. Okay. But they were doing some good stuff for pediatrics, basically, which is always good to hear. So how long were you there for in recovery?
Mugabi: I was there in recovery for, I’d say maybe like a month or two or three. Because I remember after the doctors diagnosed me with having a stroke, they put me on blood thinners immediately because they said that they weren’t 100% sure on the cause of the stroke, especially because I was nine years old and they were like, “This is the first time we’ve seen this.”
Brianne: Yeah. “We don’t have a lot of protocols.”
Mugabi: Yeah. Cause they were like, “Everything that med school teaches us about stroke is 65 plus, smoker for 50 years, diabetes, overweight, like, all of these things that this child does not have.” And they were like, honest about being in over their head, but willing to try and figure it out. And one of the things they noticed is that one of the blood vessels on the left hemisphere of my brain does a like, loop-de-loop, and it’s like, a lot thinner than the rest are. And they weren’t sure if the like, effect of the stroke on the brain caused that blood vessel to like, twist and become thinner because the stroke impacted the brain and that blood vessel like, reacted. Or if that blood vessel was like that all along because I have no brain scans before I was nine, because why would a child have to have an MRI or a CT scan? There was no reason. And so they’re not sure if it was like that all along and something about like, that day set it off, and they’re also not sure if it was like that and if it’s completely unrelated to the stroke.
Mugabi: They can’t tell a cause and effect after the fact
Brianne: Right. And like… like you said, we don’t look at every single nine-year-old’s brain when it’s presumed healthy, to have a baseline. I’m sure that there are studies. I understand all of that, but that’s still, like… we don’t actually know everybody’s body on the inside, so we don’t know what… when something is guaranteed to cause something else. It’s unknowable still.
Mugabi: And that’s the one thing that I really appreciated about the initial medical care that I got, which is very, very different from the medical care that I got in the states when I was an adult, and I believe that race factors heavily into that. Because like, in Singapore I was this Black child with a father with some high position in the UN who… the UN was covering everything. And I was treated with a sense of, “We’ll be honest and upfront with you, and we’re not going to gaslight you.” So they were very, very honest about what they knew and what they didn’t, and they put me on blood thinners immediately because they were like, “That blood vessel is like, very suspect and is of concern for us, and we don’t know if without these blood thinners, you won’t have another stroke.”
Brianne: Right. “This feels like the more conservative option, to manage the risks that we see maybe.” Yeah.
Mugabi: And it was like, a low dose of blood thinners and after they put me on them, I noticed a massive difference because the stroke, what it did to my body was it completely paralyzed the right side of my body, and the only reason that I was able to regain mobility and I’m able to like, extend my right hand is because I went through nine years of intensive physical therapy. We went to a lot of different doctors at that time, and I remember after Singapore they needed us to do a test that they didn’t have the equipment for.
Mugabi: They needed us to do an angiogram. And this was in 2001, so angiograms were not like, as prevalent as they are now. And at that time, there were very few hospitals in the world that had the capabilities of doing an angiogram. One of the people in Singapore went to med school with some guy in Columbia and he was like, “Yeah, we got an angiogram. We can set this kid up.” And one of the things they wanted to rule out was moyamoya which is a disease named after this, I think, Japanese scientist, but it’s one of the causes of childhood stroke, and it’s fatal, within like a year, you’re dead.
Brianne: Okay. So high-risk, very much, they want to identify it for this reason. It sounds like, not well-treated at this time.
Mugabi: Exactly and I was completely oblivious of this as usual. Like, my parents were preparing for my impending death and I was like, “Eh. I’m just playing my games.”
Brianne: Yeah. Like, “I love these games. Life is maybe not great, but not as bad as it could be.”
Mugabi: Exactly. And like, one of the great things about being sick is that everybody like, dotes on you with food. And so like, I could get whatever food I wanted. I’d be like, “Yo, dad, can we order a pizza?” He’d be like, “Yeah!” And I’d be like, “This is amazing.”
Brianne: Yeah. You’re like, “Okay, okay. I get it. I get what the perks are.”
Mugabi: And so I think I was in Singapore for like, four months or so, and over that four months, I did a lot of like, testing, MRIs, cat scans, a lot of blood work, I was put on my blood thinners. And I started a very, very intensive, physical therapy program because as I said, the complete right side of my body was completely paralyzed. I couldn’t walk, and I used to be right-handed, which made things like 10 million times worse.
Mugabi: My right side was my dominant side.
Mugabi: And so I went through writing lessons, like, relearning how to write with your non-dominant hand which was very very difficult, but now I’m left-handed. So it works.
Brianne: Yeah. It takes time.
Mugabi: Yeah. And I had to like, relearn all those basic tasks that you take for granted when you have a dominant hand that works, like brushing your teeth, eating, using a knife and fork.
Brianne: Yeah. Like, just everything. Yeah.
Mugabi: That was very frustrating. And also because of my right side of my body was paralyzed, like the right side could not even be you, it couldn’t move. So like, I was one-handed, essentially, for a couple of months. And even now that I’ve regained most of my mobility, my right hand is still has no fine motor movement. So like, I can use the hand for like support, but I can’t write with it. I can’t like, pick up a fork and eat with my right hand, you know? I use it moreso as like a support, to like, assist and the left hand pretty much takes care of everything. So I had to go through a lot of relearning and OT and PT, which was intense and which was very painful because I was paralyzed and they were like, moving in ways to like, try and regain motion and movement, but it was very very painful. And then came all the like, wackos, you know, who like, come in and are taking advantage of my parents desperation and are like, “Oh, we know something! Have you tried…”
Brianne: “We can fix this. No problem.”
Mugabi: And my parents being desperate, were like, “Sure thing,” you know? And so I got to like, all of them, and one of them I remember was particularly traumatizing. One of my mom’s friends was like, she was an electroshock therapist, and she believed that electroshock therapy could heal me of my paralysis. And so my mom would take me over to her house like, twice a week, and she’d like, hook me up to the electrodes. And then she’d like, shock me. I was like crying like, crying out in pain, saying like, “Stop.” And she was like, “No, we have to increase the voltage because the paralysis is not going away.” Running like, volts of electricity through my body is going to help. But I was a child, like
Brianne: Yeah. It’s so hard. It’s like… like you say, the desperation that gets taken advantage of, and I think so many people, maybe not this person, but so many people also will like, latch onto one thing where they found a part of it helpful, you know? Like there’s always… not always, but there’s often like, this kernel in there that makes people even more committed to believing it, which frankly, I think is more dangerous than if people were sincerely scamming. I think a lot of people in this space are that. They have to believe that it works in order to make sense of the universe and any threat to that is a threat to their entire life. And it’s like, “This is a tough situation to be in when I just don’t want your treatment anymore because it’s definitely not helping me and probably hurting me.” Whew.
Mugabi: Yeah. I’m very much a, “to each their own,” in terms of like, treatments and medical practices and like, if something works for you, great! Use it, you know? But like, not everything works for everyone. Yeah. And if somebody’s telling you that something does not work, why don’t you listen to them? But I know they didn’t listen to me cause I was a child, and that taught me very early on that like, I will not be taken seriously in this world until I’m an adult. And then I became an adult and I realized I’m still not taken seriously because I’m Black.
Brianne: Yeah. You were like, “Wait a minute. That was not the only problem. I feel very bad.”
Mugabi: And so yeah, we went through a couple months of trying out everything and then went to Columbia for the angiogram. And that was when they ruled out moyamoya, and that was the first time that my parents had the weight off their shoulders of, “Your child had a stroke. He’s going to go through a rough time. He’s going to need a lot of physical therapy, but he won’t die.”
Brianne: Yeah. Like, “We’ve ruled out the cause that is most likely to lead to a fatality, so we think that this is probably good news,
Mugabi: And I’d adjusted very well to the blood thinners. They saw the blood moving through my brain with the angiogram, and they saw that the blood thinners were doing their job and the blood was moving smoothly and everything was… there was like, no clots, and so they were like, “Yes, there’s all this damage in terms of the brain damage from the stroke, the paralysis, and I developed a stutter, migraine disorder, I’d occasionally go into convulsions. But they were like, “All this sucks, but it’s not fatal. We can rule that out.”
Brianne: Yeah. And like with a stroke, they would be looking for like, “Do you have a brain clot now? Is there something else?” Right? Like, “Is there something else that we definitely need to monitor immediately because it increases the risk?” Yeah.
Mugabi: Exactly. I’ve taken blood thinners every day of my life since I was nine years old, and so they’re like, “As long as he keeps taking the blood thinners, and as long as he continues working at whatever he’s working on and just gets a follow up in terms of testing and stuff like that every couple of years, just to make sure nothing has changed, he’ll be able to like, function and continue just like, trying to figure out how he can do what he can do best.”
Brianne: Okay. So you went back and you, at home started doing OT/PT and then also getting exposed to like, the seedy underbelly of wellness culture, which is kind of people who offer cures that they are very confident will help based on very little evidence.
Mugabi: Yup. And a lot of preachers and pastors too, a lot of religion.
Mugabi: Which like, taught me from a very early age. That religion is a giant scam, you know?
Mugabi: A lot of it.
Mugabi: I believe religion has a very distinct purpose, and I think that like, if people use it for its purpose, then it can be one of the healthiest outlets possible. And I try to use my religion for its purpose. I use religion as a form of meditation. I use religion as a source of strength. But I never look to religion to take away anything that it is that I’m dealing with. I look to it to provide me strength to deal with whatever I’m dealing with, but I never look to it to like, do a complete 360 on my health, which is what a lot of people looked at religion for, for me. And I noticed that like, a lot of people were very disappointed that I wasn’t healing miraculously. And I was like, “Why are you so upset? You’re not person that has to deal with this. I’m the one who got my hopes up who went to this random…” I went to a lot of people, especially because after my stroke, after the first four months in Singapore, and when my dad was setting up the appointment in Columbia, we came back home to Uganda because the way my dad and mom raised us is even though we grew up moving around a lot and he was posted in Bangladesh at that time, every summer, cause the UN was like, “You and all your kids get free flights back to whatever country of your choice once a year, as part of the benefits package.”
Brianne: Right. I mean, for the UN that does make sense as a perk, although it does sound like an incredible perk.
Mugabi: It is! Because there were five of us. There was no way my dad was affording flights for seven people back and forth to Uganda every year on his own.
Brianne: I know, that sounds very expensive.
Mugabi: Yeah. A lot of UN kids, their parents would be like, “Oh, we’re going on holiday to the States or France or Australia.” But my dad was like, “No, we’re going back home.” And my siblings were always like, “How come we can’t go to Australia? They gave us a free flight.”
Brianne: Yeah. “Where’s our fun trip?”
Mugabi: But like, in hindsight, I see what my dad was doing. He was trying to make sure that we had a relationship with the country where we’re from.
Brianne: Right. Of course.
Mugabi: I’d never lived in Uganda. I was born in Nigeria. When I was three we moved to Sudan. When I was six, moved to Bangladesh, and at this point I was nine and like, Uganda was a place that I went for summer vacation, but like, it was not home. And my dad was trying to cultivate that relationship, and so like, it’s all thanks to those trips to Uganda that I have a relationship with my uncles and my aunts and my cousins cause otherwise like, I would have grown up completely separate and I wouldn’t have even had a frame of reference for Uganda. And so we came back home for the summer and that’s where a lot of the preachers and pastors also like, witchdoctors and traditional healers came into the picture because a lot of the family instantly… because there’s a very common practice across the African continent and the diaspora of like, if something can’t be explained, it must be a witchcraft. And like, witchcraft is legitimate, and curses are legitimate. And because my dad was the leader of his clan, a lot of people assume that somebody put a curse on the clan and the way curses operate…
Mugabi: I know, like, you know, the theories of how curses operate, but I have no idea if there’s any truth to this whatsoever, but the way they told me curses operate…
Brianne: Like all things about health, it’s impossible to know.
Mugabi: Exactly. So curses attack the person who is in charge if you put a curse on the family, and so they thought that the curse went for me, being my dad’s son, as a way to get to my dad
Brianne: Like, as punishment for your… and maybe punishment might be like, the wrong intent for the verb kind of, but like, punishment for your dad, basically that you would have been impacted. Like, it was about his life as opposed to being about your life in this interpretation.
Mugabi: Exactly. I’m like, “Why are you decentering me from the equation? Because I’m the one dealing with this!” I understand that my parents went through a lot because like, I cannot relate to having a child have a stroke and having to deal with all of that, and mentally it was like, a nightmare for them.
Mugabi: But like, why wouldn’t the curse just attack my dad? If it was trying to get to him… I suppose it hurts worse to see your child suffering than for you to go through something because like, I see the way my mom deals with it. She’s always like, wishing that all of my health issues would just go to her cause she’s like, “It hurts me to see you dealing with it.” And so I suppose the curse was smart in that way, but at the same time, I don’t believe in the curse. But a lot of people… because a lot of the family had a lot of bad blood with a lot of people, and so a lot of people had actually actively placed curses on people, on the family. And so they were like, “The fact that I have racked up a $3,000 gambling debt is the reason Mugabi’s sick right now, my bad.” And then like, I had family numbers, like attack those family members who like, put curses or like, had bad blood and like, attack them and be like, “Take the curse away from Mugabi!” and I’m like, “Why are you enforcing in my name? I did not ask you for this. Like, this poor person is just like, an addict to gambling, dealing with their own things or like, going through whatever. They have nothing to do with what’s going on with me.”
Brianne: Yeah. And like, they don’t need to carry that moral weight and guilt around either. Like, “I don’t want that for them. No matter what they may have thought in the past.”
Mugabi: I’ve had people physically assaulted in my name and I’m like, “I’m a child. Like, I did not ask for this responsibility or burden.” And a lot of like, witchdoctors with their magic, one of the things they do is they take a chicken, they dip it in like, some water, then they smack you with the chicken. So like, as a nine year old I’m sitting there, shirtless because it only works if you’re shirtless, I’m like, “How does the shirt really affect it?” Anyways, getting smacked by wet chicken and the chicken is screaming because the chicken is alive and like, has no idea what’s going on. And while the witchdoctor’s, like…
Brianne: This is not the chicken’s preference either.
Mugabi: No, nowhere near. And then like, a lot of them said things like, “Oh, in seven days, you will be healed,” and that raised my hopes, you know? And then when the seven days happens, and I’m not healed, I’m like, disappointed. It was a lot to go through, and it was very difficult because of the fact that my parents had no idea what they were… what was going on. And all these people were throwing all these suggestions at them, and they took them because they were desperate.
Mugabi: And I’m grateful to now be an adult and to be able to say, “No.”
Mugabi: “I’m not going do this because like, we already went through this.” And like, all these people, no matter how well meaning they might be, they’re throwing all these things at us, but are they paying for them? Are they facilitating the process? Do any of these people who are throwing all these witchdoctors at me ever come to visit me? Ever come to check up on me? No.
Brianne: There’s something in it, too. I know, for me, when people have like, really wanted spiritual interventions for me, it’s like, “Are you open to this not working when you even suggest it? Are you going to be there to pick up the pieces when it doesn’t work? Emotionally, and as well as financially?” There’s all this other stuff that’s packed into this kind of suggestion that people just have no idea about, and they continue to have no idea about as they go around like, violently suggesting it and not even realizing what they’re putting on people. It’s so complicated, even when I, like, as you’ve been trying so hard to do, I can create compassion for why people make these kinds of suggestions. And at the same time, it’s like, “You guys got to listen to us sometimes.” People come out with these suggestions that they are not paying for, that they are not really taking on the load of. They just want things to be better so that they don’t have to engage with the fact that life can sometimes be difficult, is how it can feel.
Mugabi: Which is why as an adult, I don’t accept a suggestion unless you’re doing all the work for it. Now as an adult whenever I get a suggestion, I’m like, “Okay, great. You can get this thing for me and send it to me. If you’re not willing to do that, I’m not going to take it because like, what’s the point of throwing me this suggestion and acting like you want to help, if you’re not actually willing to like, you know, put some money or some time calling someone or some initiative into it?”
Brianne: Yeah. It’s a whole world of unsolicited advice and fringe interventions everywhere and yeah. And the overlap with religion is so hard. I hear from so many people something really similar to what you said. That like, there’s this thing about how faith can be really comforting and faith can be a place where you get strength, and a lot of people who are chronically ill and disabled have that relationship to faith, whatever their faith may be. And then on the flip side, in their faith communities that they might’ve grown up in or with their families or with people who they know, it turns into a weapon of like, “You must not have enough faith or you would be healed by now.” And like, it’s really hard to get that message.
Mugabi: Yeah. Which, I remember I was at this like, fair at the Uganda museum a couple of years ago to like, promote and talk about my book, and I was just walking around talking to people because that’s how I sell books. And I started this conversation with this guy, and he asked me about my book. And so I start telling him about it. He’s like, “Have you tried prayer?” And I was like, “Of course I’ve tried prayer.”
Brianne: “In the last like, 10 to 15 years, has it ever occurred to me?”
Mugabi: Exactly. And then he goes, “You must not have tried the right prayer. I have the right prayer.” And I’m like, “Who are you to have the exact specific combination of words in prayer that will miraculously heal me that like, every single other faith-based healer and every single other priest or pastor or Emissary of God or imam or whatever cause I’ve been to all different religious faiths for healing. Because we grew up moving around a lot, like living in Bangladesh it was like, all Muslim healers, in Cambodia it was Buddhist healers. I’ve literally tested like, all major religions in terms of healing, and none of it has worked. So like, why are you so specific and so powerful? And then he’s like, “You should come to my church, and you can book a session with me.” And I’m like, “So you want me to pay you for the same exact thing that I went through multiple times, which does not work.” And then he goes like, “You see, this is why you are disabled because you don’t believe, and you don’t have faith.” And I was like, “I’m done with this conversation,” and I just walked away.
Brianne: Oh my God. Yeah. And the part that I find most frustrating, in addition to all of the things that we’ve already talked about, is it’s just like, “I would love a like, demonstration, just like, give me some data to work with. Like, if you shared data or some anecdotes, I don’t need you to have like a full fledged study.”
Mugabi: But the thing about these people that they always have anecdotes, “This person who was like you, who I healed. Look at that person! They’re walking now, and they couldn’t walk.” And it’s like, “Have you slipped that person 10 bucks to say that, ‘This person healed me.’?” Like, I can see through it. Like, I’ve been through that.
Brianne: I don’t know what I want. Because now I’m like, “I don’t really want a demonstration,” because I know that there’s literally a history of that, especially in the US. Like, tent revivals, it was a lot of demonstrative faith healing that definitely isn’t real, and I’m not supporting that. So I don’t know what I want, I guess I just want people to not be like this, but that’s a whole other problem.
Mugabi: I’ve literally had people like, say that, “Oh, I can see the demons in this child. The demons are on the right side of the body.” And it’s like, “Wow! How intuitive you saw the fact that my right hand is paralyzed!” Anybody can that, and then it’s like, “I’m casting the demons out of this boy.” This person is being so descriptive that like, I start thinking like, “Can he actually see these demons?”
Mugabi: Because like, he’s telling me how the demon looks like, it’s a very vivid image. And I was like, “Wow! There actually is a demon.” But they treat disability as a personal failing.
Mugabi: Which angers me a lot.
Brianne: Yeah, absolutely.
Mugabi: No one chooses this.
Brianne: Yeah. There’s a whole shift in perspective between like, I don’t… I mean, I like, have been using the language of hauntings and ghosts a lot lately for myself, partly because I’m undiagnosed and partly because like, some stuff just doesn’t make sense yet, but it’s like, me using that language for myself as a way to externalize the problem from my very essence is really different than somebody using this kind of imagery to make a point that I’m just not trying hard enough to expel this from my essence, which are pretty different concepts. Yeah. We’ve uncovered a few of the like, genres of quack who are wandering around looking to take money for healing efforts, and you had also done some OT and PT, so you kind of had like, both of those things going on.
Mugabi: Yeah. And OT and PT is honestly the thing that most significantly helped. I had a lot of doctors give up on me. I had a lot of doctors telling me that I’d never walk again, a lot of doctors. I remember in Columbia, which is like, my first experience with like, medical racism in the States where I was like, “Huh, these people treat me a lot differently than the people in Singapore did.” Cause it was my first time ever in America like, I went for the angiogram. That was my sole purpose of going to the country. Me and my dad and my oldest sister all went together.
Brianne: So straight to New York.
Mugabi: Yeah, exactly. And this was while we were back home for summer holidays cause those appointments take a while to book and so by the time the appointment window was open. It was over the holidays, and so my older brothers were both really angry cause they were like, “How come he gets to go to New York?”
Brianne: “On the fun trip! We want to go somewhere else.”
Mugabi: And I was like, “You think this is fun?”
Mugabi: I’m like, “I’m about to have an angiogram. This is a medical procedure.” But I did eat a lot of McDonald’s came back with new clothes and so they were jealous.
Brianne: Yeah. Yeah. And I’m sure like, your parents are trying to make it kind of fun for you because they know that it’s otherwise just like, a slightly terrifying medical procedure.
Mugabi: Exactly. And so like, we went to parades and like, amusement parks and did all the fun stuff, which was great. But I remember when I was in the states, I took a cognition IQ test because they were trying to see if, the stroke had affected my cognition. And I remember the doctor proudly telling me that I would never be able to read anything longer than a few sentences because of the damage the stroke had on my brain, because he was like, “You see where the damage is? That’s in the language area. That’s why you speak with a stutter. And that’s why you’ll never be able to read anything longer than a few sentences.” And I looked up at him and I was like, “I just read the fifth Harry Potter last night.”
Brianne: Yeah. Like, “I already… this isn’t… where are you getting this from?” Yeah.
Mugabi: Yeah. And he was like, “What? That’s impossible. You are a medical mystery.” And I was like,
Brianne: “Is it?”
Mugabi: But like I only got that in the States, and so I was like, “Huh, this is interesting.”
Brianne: There’s like, an attitude here.
Mugabi: Yeah. All these white doctors are telling me that I will be unable of doing all these mental things that I clearly can do. Like, it’s the physical that was affected for me during my first stroke. That’s one of the reasons that I fell in love with reading so much because it was like a form of escape, and I could transport myself to these worlds. And it was something that I could still do with one hand, but they kept on putting all these labels on me of, “This is gonna affect you intellectually.” And like, “Why do you keep on saying this when it has not? And when I’m telling you that it has not. But because of the brain damage, you cannot see my brain possibly not being affected intellectually because of the location of the damage. Even though I’m telling you that it’s not, so you’re not listening to me.”
Brianne: Yeah. Yeah. Like, “You’re looking at the scan, and that’s it. You are not listening to me. You are not paying attention to my input.” And like, yeah. You’re like, “That’s an interesting thing when this obviously should rely on a conversation about what your actual capacity is.”
Mugabi: And they were like, “These are the results of the test. The test shows that… Oh!” They were like, “IQ above average? And how is that possible?” Ay ay ay…
Brianne: Yeah. You’re like, “Everything about this is wrong.” Like, this system was devised to make your assessments of people’s intelligence correct, and like, having it not meet your expectations because you’re super racist is also breaking your brain, but the device was racist in the first place. Like, there’s just a lot going on here, and it’s all bad.
Mugabi: The States was the first place where I experienced a doctor calling all of his other doctor friends, and being like, “Look at this! And they’d all be like, “What!? We can’t believe it. What a fascinating medical mystery! How’s he even alive? How’s he even able to function? How can he speak? We don’t understand it.” And I’m like, “Are you looking at me?” Like, in the States, I’m looked at as like, a science experiment and like, I’ve been written up about in medical journals as like, this fascinating medical case. And I’m like, “How about you try to help me get to a better state of functioning like I’m asking you to, instead of like being all, like, ‘We can’t even believe that you’re able to do this, and there’s nothing we can do for you because clearly you’re beyond modern medicine!’?” And it’s like, “Okay, I’ll just go back to my physical therapist because at least they helped me.”
Brianne: Right. Yeah. You’re like, “This is definitely… I can see what is happening here and the colonial influence on medicine where… everything about the power dynamic was set up for just like, gentlemen who wanted to do casual research on patients that don’t have a lot of say in what happens, in the best case scenario.” My gentle language describes the best case scenario for colonial medicine.
Mugabi: I remember waking up… because I developed a seizure disorder later on, and I was getting some follow-up care. And sometimes I wake up into a seizure, so like, I have a seizure in my sleep and when I wake up it continues. And I remember being in a hospital bed, waking up into a seizure and realizing that there were like, 10 doctors crowded around me and like, realizing what’s going on, and then like, the lead doctor is like, “You see class? See how his EKG does not have any of the signs of epilepsy, yet he’s experiencing an epileptic attack? Look at this medical mystery.” And I was like, “How did I become a part of your class while I was asleep?”
Mugabi: Like, “I not consent to this.”
Mugabi: Well, I did technically because by just signing that form for the hospital, you consent to anything, which is like, ridiculous.
Brianne: Yeah. And yeah, it comes up in a lot of places that like, slowly people discover and get coverage and we’re like, “Oh, that’s a really messed up default, actually that most people would not choose.” Yeah. So that was Columbia.
Mugabi: Yeah, Columbia was a trip the med students were asking me questions and being like, “So are you able to verbalize?” And I was like, “I’m literally having a seizure right now, do you think I want to like, be playing 21 questions with you? Can you just leave me alone?”
Brianne: Yeah. Like, “I’m not a specimen.”
Mugabi: Yeah, but, but I couldn’t say that because if I do, I become an angry Black man.
Brianne: 100%. Yeah.
Mugabi: And expressing frustration would only affect my quality of care, so I just keep it to myself and the vent in my writing.
Brianne: Right. You’re like, “I’ll just lock this down for later. Ha ha.” Okay. So I feel like we’re kind of jumping around, which makes sense, just like, in the recovery stuff. And then it sounds like things were kind of stable or more or less the same for a number of years.
Brianne: And was that until you actually moved to Michigan or did we have any other things in between that we want to make sure we cover?
Mugabi: There honestly wasn’t much in between. It was stable, and it was a gradual progression of regaining of functioning. I remember after the first stroke, my doctors banned me from PE cause they were like, “His body can’t handle any rigorous activity.” So like, I went into school with like, a note saying I wasn’t allowed to do PE. And that like, massively affected my social life cause I was in the fourth grade.
Brianne: Yeah. You’re like, “This is the only fun class… sometimes.”
Mugabi: Yeah, and especially being a young boy like, so much of boyhood centers around athleticism and sports, and like, being unable to do sports immediately put me in a category of like, “You’re not a boy,” you know? Because during PE time like, I just sat in the library and read books. And like, everybody didn’t understand me cause they were like, “Why is he not playing sports with the other kids?” So that was the first year that we were in Cambodia. This was after the stroke.
Mugabi: Cause the stroke happened February, 2001. I was in Singapore from… pretty much February until May, June. Then we went back to Uganda, where all the fake healer stuff happened, and witchdoctors, and then went to Columbia over that summer, and then the UN reassigned my dad because he’d done three years in Bangladesh, and so they reassigned him to Cambodia, which was actually a great place to be recovering from a stroke in because… I’m not sure how familiar you are with Cambodia’s history, but they were involved in the Vietnam war because of the border, and the US ended up laying a lot of landmines all across Cambodia as like, a tactic to kill people.
Mugabi: Cambodia also had its own dictator leader called Pol Pot, and they had the Khmer Rouge, which like, wiped out an entire generation of people. It was terrible. And that only accelerated the landmines, and so the fact that Cambodia has so many landmines across it as a result of wars, means that there are a lot of amputees. And so there was a very clear, visible presence of a lot of disabled people physically around me day-to-day. When I was going to school like, one of the kids in my classes was an amputee with a prosthetic leg. The person at the shop down the street where like, I bought candy from was an amputee. There was a very strong culture in Cambodia of physical therapy because of the landmines, and there was a very strong healthcare system for disabled people because of the landmines.
Brianne: So it was like, you were kind of after they had to build up an entire infrastructure to support… Yeah. okay,
Mugabi: Exactly. Yeah, because like, the Khmer Rouge… I mean, the Vietnam war was like, in the sixties and seventies, right? Khmer Rouge happened like, right after that in the like, seventies, eighties. And so by the time we came in, in 2001, they’d already like, built up the infrastructure in response. And they’d been like, at peace and not at war for some time, which significantly helped my recovery process because that was where I got on my muscle relaxants because the physical therapist I was working with was like, “He needs something more to help with the spasticity.” And like, none of the doctors in Columbia said anything about that.
Mugabi: But like, the minute I started taking them, my muscles started becoming a lot less spastic, improved muscle tone. I was able to like, walk… more efficiently, I guess. Before the muscle relaxants and without the muscle relaxants, even still like, if I forget to take them or something, like I notice that walking is a lot more difficult than it is with them.
Brianne: Yeah. I don’t know the word for that, but like, impaired gait.
Brianne: Your gait changes. And the thing I’m struck by most, just by like, thinking back to the doctors at Columbia as the example, is just like, the difference between medical professionals who think that their job is to make their patient’s life better and medical professionals who think that it’s their job to expand medical knowledge.
Brianne: Those aren’t necessarily in conflict. They don’t need to be in conflict at all, but somehow a lot of people treat them like they are.
Mugabi: Exactly. Like, Cambodia was the first time I got a leg brace because my physical therapist was like, “This will help.” And they already had the infrastructure in place because they’d had tons of people who were victims of mines. And so like, getting a leg brace was super easy. The only thing was like, it was to a Cambodian skin tone, so like, it was 10 shades lighter than I am. I was like, “It’s a leg brace which I only wear indoors for like, a couple hours each day. I don’t take it to school, so like, I’ll allow it.”
Brianne: You’re like, “I can live with it, but also what the hell?”
Mugabi: Like, I would appreciate more diversity in terms of like, race, skin tone, but I mean, that’s the same thing with band-aids.
Brianne: Yeah. It’s the same thing with a lot of things, yeah.
Mugabi: Yeah, Cambodia was good to me. And like, it was a slow progression. The first year I couldn’t do any PE. And then by the second year, my physical therapy had progressed me so far that the doctors were like, “No, we think he can get back into PE now because he’s clearly like, capable of a lot more than he was.” And I was getting lot of my primary follow up care in Thailand because Cambodia’s health care system wasn’t the best at the time, they didn’t have like, the right equipment, like MRIs, CAT scans, and all that.
Brianne: Yeah. Like, the diagnostic stuff.
Mugabi: Yeah. Yeah. They had couple of CAT scan machines, but they were like, always fully booked. They didn’t have the right diagnostic equipment for me. And Thailand was right next door, which is convenient, and they have some of the best hospitals in the world. It was really great that I was able to do follow-up care there. I think every summer I’d go to Thailand, get my workup done, a lot of McDonald’s.
Brianne: Yeah. “Here’s your treat, here’s your images.”
Mugabi: Exactly. And then come back to Cambodia with like, brand new clothes and my brothers would be jealous and be like, “Oh, how come you get to go to Thailand and eat McDonald’s and come back with new clothes?” And I was like, “I got you some clothes too.”
Brianne: You’re learning.
Mugabi: Yeah, exactly. So Cambodia is good for me, and it was just like, a slow progression in terms of like, having difficulty walking to being able to run. I was able to like, play basketball and play football with my friends, and my gait improved and became like, better for my body. And my mobility in terms of my hand improved significantly. I was like, angry a lot as a child because I didn’t understand a lot of what was happening to me.
Brianne: Yeah. Fair.
Mugabi: But like, I appreciate my parents for not treating me with kid gloves because I’d become disabled. They were still like, “Mugabi, you need to wash the dishes. You need to…” you know?
Brianne: Right. “You’re still a member of his family.”
Mugabi: Yeah, exactly. Which I appreciated. And then when I was 13, my father died, which created a massive shift in our circumstances because most of the amazing UN benefits went away when he went away, and I was very accustomed to living a cushy lifestyle cause it’s all I’ve known. And for the first time I was having to like, struggle financially. And I was like, “What is this? This is completely foreign to me. I don’t know what’s going on. This is weird.” He died in 2005, and then the family moved back to Uganda. And my mom was able to find a physical therapist here to continue doing follow up sessions and with him I progressed and progressed and progressed. And I got to the point where I was able-bodied passing, which is very strange. Physical therapy trained me in very, very specific ways on how best to present and pass as able-bodied because able-bodied is like, the norm and the optimum. And so like, they teach you how to sit, how to walk, how to like, do everything so that it’s the most able-bodied seeming rather than the most comfortable for my body. And so as much love as I have for physical therapists, they’re also trained in a certain way, and I really, really wish that there were more disabled physical therapists because we need people who actually get what it’s like.
Mugabi: More disabled people in healthcare positions in general.
Brianne: Yeah. Yeah. In every domain cause it really is so similar and like, there’s so many stories that people who get sent to PT with fatigue or side effects or whatever. And most people are like, “Okay. I mean, I’m interested in recovery, but like, ask me about my recovery goals because a lot of default recovery goals are just not related to my life at all. And like, I don’t want to put energy into learning how to sit like in abled person when I could instead be putting energy into like, developing tactics for doing laundry because that’s hard.” The goals are misaligned a lot.
Mugabi: Definitely, definitely. And I feel like if a lot of PTs realized what PT does to our body, I think they’d be a lot gentler with it because like, they have no idea the ramifications. Especially… cause like, later on I developed post exertional malaise. And like, I remember going to PT and coming back and instantly having a three hour long seizure and being like, “Is this worth it?” But every single health professional that I saw told me, “Push yourself. Push yourself. Push yourself.” So I was like, “I guess I have to.”
Brianne: Yeah. And like, I don’t know if you asked the question that time, but I think often when we do ask the question, like, “Hey, this weird thing happened. Should I still be exercising?” The answer from medical professionals is almost always yes, but like, we know from research, especially into M.E. which is where post exertional malaise as the term, I think, is like, the most used is like, “Exercise can be harmful.” And then especially because of like, are you having these reactions? Is it because there’s actually some ongoing damage happening from the like… there are so many questions that just do not get asked, and we need them to.
Mugabi: And there’s also a way to like, grade the exercise therapy, which like, I experienced later on at the Mayo Clinic where like, they started me off really, really, really slow. Like, they started me off, walking the length of a hallway, like 10 times, and that was it. The next day I walked the length of the hallway 11 times. Instead of PT, which like, forces your body to like, exert itself in certain ways that might not present until later on. I feel like one great thing that the Mayo Clinic did for me was they started really, really slow and they increased very, very gradually, so my body was able to adjust to it, without as much post exertional malaise as I had when I was doing the more intense PT. One of the things that helped with that actually was the Mayo Clinic had people with chronic pain on staff, which was revolutionary.
Brianne: Yeah. Okay. So let’s get to Mayo. So you are back, while this is happening and then things are kind of stable, but you’re dealing with all of the things. I’m so glad that we’ve talked about all of the things, but yeah, all of this has been happening and then you moved to the states for school, I think you said? Before we started recording.
Mugabi: Yeah, yeah. I got a full ride to University of Kansas, which was great because I couldn’t have afforded it without it. I went there for university, and that was my peak of like, able-bodied passing. I had so much internalized ableism that I like, hid it and was like, ashamed of it. I remember having to have conversations where people would be like, “So what’s up with your hand. We’ve noticed that.” I was always like, “Why does everyone always ask me this question?” And also there are a lot more sensitive ways to approach that in hindsight than like, “So, what’s up with your hand?”
Mugabi: But like, I still remember like, I used to be an RA, and like, one of residents was laughing at me because I walk with a limp. And I was like…
Brianne: Yeah. “Where is this coming from?”
Mugabi: I got a lot of this as a child, but like, I was a child, and I was expecting it from children. Cause I hold children to very very different standards than I do adults. This is a 19 year old, you know? And this is the same person who asked to be… cause I consider myself, an occasional rapper, and I used to make music videos for fun in college. This is the same person who begged to be in my music video.
Mugabi: You know? Like, “Why are you laughing at me behind my back, yet you’re begging to be in my music video, and you’re like, loving everything that I do on Facebook?” It’s not adding up. And so I dealt with casual ableism here and there throughout Kansas, but I was like, at the peak of my health then. And so I was like, doing all the things because I went so long being unable to do so much, that like, the minute I regained the ability to do some things again, I was just like, “I’m hitting the ground running,” because also, I didn’t know how long it was gonna last. The doctors told me they didn’t understand what happened with the first stroke. They told me that they didn’t know what was going on in my brain. And they told me, “It is incredibly likely that you will have another stroke and that you will die from it.” And so I was like, “Okay. So like, I have this like, impending stroke over my head.” So I’m just trying to live life to the fullest when I’m capable of it. And so like, being unable to do PE for a while, and when I regained my physicality back, I was like, running all the time. Like, I was doing 10Ks, training for a half marathon. Like, “My body can do this. This is amazing.”
Brianne: Yeah. You’re like, “Now I get to know what running is like.” Like, “Okay. Sure.”
Mugabi: And also because like, there was this mentality ingrained into me through PT and through all the doctors if I pushed myself hard enough, I could regain what I had before I was nine years old, which I’ve since learned is a complete lie.
Brianne: People really want to tell people that though,
Mugabi: Yeah! Like, everyone told me that, and I believed it for so long. And that’s one of the reasons that I pushed myself so hard was because they told me that if I pushed myself, I’ll get it back.
Brianne: Right. That it’ll be worth it.
Brianne: Yeah. So as you were kind of recovering and pushing it as you’re describing it, and also concerned that another stroke could be coming at any moment, but also you’re like, able-passing at this time, how was that for you in terms of identity? Or do you think you thought about that a lot? I feel like, especially moving environments and getting to reinvent so much, maybe it wasn’t that complicated, but were you actively thinking about this? Like, did you identify as disabled? Would that have meant anything to you at the time? Because obviously that’s like, a community term that kind of means different things to different people, too, I think. And language shifts.
Mugabi: Yeah. I think I always identified as disabled, but I was ashamed of saying it for a long time. It wasn’t until my second and third strokes that I became comfortable saying it out loud, publicly identifying. I was in the closet.
Mugabi: Yeah. But like a lot of people in the closet for queer reasons, that was partly a safety thing, you know? Because like owning it and being loud and proud about it is only capable if you’re in a certain position.
Brianne: Yeah. Safety needs to be present. Yeah.
Mugabi: Yeah. but like I remember feeling very isolated in terms of my disability because I didn’t have any disabled friends. And it wasn’t until after stroke two and three, that I met disabled friends. Cause even like, my friend in Cambodia who was an amputee, he didn’t identify as disabled and he was one of those like inspiration porn type people. Like, he was captain of the soccer team, running, like… you know?
Brianne: “My disability doesn’t stop me.”
Mugabi: Exactly! Running a six minute mile. Always like, physically at his best. And I was like, “He can’t relate to me!” You know?
Brianne: “Our disabilities are very different.” Yeah.
Mugabi: It wasn’t until after college that I made disabled friends when I was like, “Wow, this is what I’ve been missing my whole life.”
Brianne: Yeah. Yeah. I’ve just been playing this whole other game. Yeah. So Kansas, it sounds like was very much like that. And then you went to Michigan from there.
Mugabi: Yeah, I got a fellowship to do my master’s in Michigan. And I went to Michigan, spent one semester there and on literally the day before finals week like, the Sunday before finals week starts, I’m sitting down in the basement of the co-op I used to live in like, typing out one of my papers and all of a sudden I feel the pounding sledgehammers again. And I was like, “Oh my God.”
Brianne: You were like, “No!”
Mugabi: Yeah. And it’s such a distinct feeling. Like, I’ve literally only felt that three times in my life. And I was like, “It’s happening again!”
Mugabi: I was like, “This is like, my biggest fear,” because I was like, always weighing over my shoulder, like this potential other stroke. Because like, they told me, “The next one is going to kill you.” So I was like, “I’m about to die.”
Brianne: Right, “Here it is.” Oh my God.
Mugabi: And so I ran upstairs, got my roommate and I was like, “You need to drive me to the hospital. I think I’m having another stroke.” One of the perks of being more comfortable with disclosing as I grew up was my roommate was already aware that I’d had a stroke when I was younger,
Mugabi: And so like, me coming up to him and saying, “I’m having another stroke.” He was like, “Crap, I gotta get him to the emergency room.” It wasn’t like, “What do you mean?” You know? Like…
Brianne: Yeah. Like, if you told that to somebody who didn’t know, they’d be like, “Wait, another?” And you’d be like, “Now is not the time for this story.”
Mugabi: Exactly. And that’s why I’m a big advocate of disclosing with anyone you live with or anyone who like, would be there during an emergency situation. And only really feeling comfortable living around certain types of people. Like, there are a lot of people in this world who are dear friends of mine or dear family of mine, who I would never live with because like, I know the way they handle health emergencies, and it’s not what I need.
Brianne: Yeah. Not everybody has the right skillset to be with some people in that circumstance. It’s fine. Limited judgment on the scenario.
Mugabi: Exactly. And like, by this point, everything was spinning, I had a different type of aphasia where… because I kept on talking to myself, the entire time because I was trying to see if my voice was going to go out again. And it never… I never lost the ability to speak. Something weird happened where like, I was speaking out of my mouth, but the sound was coming out of the wall over there.
Brianne: Okay. So like, your sensory perception of what was happening was not aligned with what you expected.
Mugabi: Exactly, exactly. And then I went like, blind in one eye and I was like… I was like, double checking, like, what’s going on? Because like, one eye just tapped out completely my eye was just like, “done.” Like, everything is black, but my left eye was still like, blurry and everything was spinning, and I was like, super confused. I was like, “What’s going on?” And so was like, “We need to get to the hospital.” And the like, right side on my face started drooping and my like, right hand and right leg started getting like, heavy and hot. And these were all things that I experienced during the first stroke as well. And they’re all like, the things that are like, on the list of like, “Is someone having a stroke?” They’re having these symptoms, you know, and we get to the hospital, I get out of the car. My roommate helps me out of the car. The first thing that like, one of the hospital nurses does is they send someone outside and they say, “Stop right there!” I’m like, “What?” They’re like, “Stop right there. Don’t come any closer.” And I was like, “What’s going on?” They were like, “Have you traveled to Nigeria? Burkina Faso?”
Mugabi: “DRC? Over the last six months? You don’t look like you’re from around here.” Then I realized this was during the Ebola outbreak, and they were like, ‘This dude does not look like he’s from around here. He might have Ebola. Let’s like… make sure that…” I’m like, “You didn’t do that for the white person who literally just walked into the hospital right before I showed up. Like this is clearly racial profiling.”
Brianne: And like, in Ann Arbor, which is… were you at the Michigan hospital?
Mugabi: Yeah. Which is like, supposed to be number one for stroke care, which was some of the worst stroke care I’ve received in my life.
Brianne: Yeah. So it’s like, a big institution that has a whole thing, which is also… I mean, I’m sure Ann Arbor sees a lot of people from other countries because it’s a school, but also like, it’s not a hub where like, someone’s first point of contact if they were traveling with… like, the logical leaps are exactly… like, I can’t even construct another alternative thing of like, “Oh, you must have been dealing with a lot of people coming in who were an Ebola risk, and so your Ebola sense…” like, for sure they should be asking the question of everybody when they do the check-in cause that’s the protocol…
Mugabi: But not the white people.
Brianne: But like, right. But that’s not what they were doing. They were just doing the racist profiling thing.
Mugabi: Mmm hmmm.
Brianne: Thank you, Ann Arbor.
Mugabi: Yeah. And that was one of the most racist places ever, and I was like, surprised. Cause I was like, “I thought the North would be like, less racist than Kansas.” Like, Kansas was very racist in so many ways, but one thing I appreciate about Kansas is like, people would like to say, “Go back to Africa. You fucking nigger.” But they’d say that to my face, you know? In Michigan it was like, you’d smile to my face but be racist behind my back, which I don’t respect. Like, I would much rather have the person literally showing up with a shotgun because me and my Black friend are driving past. Then the person who’s like, “Oh, have you been to another African country?” You know?
Brianne: Yeah. You’re like, “This is still… the fact that the words that are coming out of your mouth, as words, aren’t objectionable doesn’t mean that the racist leaps that you made to put those words together right now…” like, there’s two things happening here. Yeah.
Mugabi: And my roommate is super confused when this is going on, because he’s white. And he was, he was like, just like, “I just saw that person walk in.” And he was trying to explain to them, “Yes, he’s from Uganda, which is none of the countries that you listed. But he hasn’t been back home to Uganda and like one and a half years.” Then they were like,”Uganda?!” They just pounced on that. And it’s like, Uganda was not even a part of that Ebola outbreak, know? But like they hear Uganda, they hear I’m from some African country then they just freak out. And so it took a while of negotiating back and forth, like 20 feet away from this person, yelling while I’m literally having a stroke!
Brianne: I’m like, ripping out all of my hair just listening.
Mugabi: You know like, the sledgehammers are pounding and I’m like, I’m just trying to get some help here. Like, like this is like ridiculous. Like I’m having trouble standing and like, my legs are shaking. Like…
Brianne: Like I shouldn’t be, yeah. This isn’t where I should be for you to check… like these boxes are probably actually on every form and you probably ask these questions very differently to everybody else. So hello. Yeah.
Mugabi: So we finally deal with that. Thanks to my roommate leveraging his white privilege, which I advocate for every single white person to do because we need it.
Mugabi: So we get in, they put me, rushed me in, a couple of neurologists come in are like “What’s going on?” And I’m like “I had a stroke as a child.” “What?! A stroke as a child?!” And I’m like “ughhhh.” Like, “I think I’m having another stroke right now. Like, can you please just give me some bloodthinners. Just like, put me on something. Like, we can talk about this later!”
Brianne: “Take action!”
Mugabi: Yeah. But it took forever to like, get some medication into my system. Eventually I fell asleep. Wake up the next morning feeling relatively better. My roommate, God bless his heart, had like spent the entire night in the hospital with me. And it’s hilarious because like most of my really close friends, like initially, like the relationship was like, you know, like, I’m not really sure what’s going on. And also because like, I just don’t like being assigned a roommate and having no choice over like who, you know, and like meeting this person for the first time as you’re living with them, it’s just a lot to process. But we ended up becoming really close. Partially due to like his solidarity during that, you know, time. And he manages bipolar disorder, and so he could relate to like being manhandled by a health system, which I appreciated.
Mugabi: And so next morning woke up feeling better ish. And the doctors were like, “Yeah, so, it seems like things have stabilized. We’ll have to do some additional testing, but we need to get you out because we need the bed.” Which is like, you know, something that is also unique to US healthcare. Like in Thailand and Singapore, once you’re in there, like they schedule all the tests, like everything you get the following day and like, you continue to ride it out in the hospital. They don’t rush you out because they need a bed, you know?
Brianne: Yeah, it’s just like beds don’t bill out at the same rate to insurance. Like there’s like this whole underlying economics to American healthcare specifically that is very different, like, and worse.
Mugabi: Exactly. And so they say I’ll have to do more additional testing, but like I’m stable enough to go back home. And I was like, okay. So I go back to the co-op. And I had told my roommate not to tell my family because I told him that I do not want to deal with like a bunch of different phone calls of everyone freaking out thinking I’m dying right now. Like when I’m like in a better place to deal with that, I can deal with that and I can get over the whole like, “Oh, why didn’t you call us right then right there?” Because y’all don’t, you know, like…
Mugabi: Y’all don’t know what this is like, and y’all don’t know how much, how difficult it is to like even speak during that time.
Mugabi: And I was just trying to pull it to the best of my ability. But my roommate ended up freaking out and called my brother. And so then I wake up to like 10 different missed calls and I’m like, okay, now I gotta handle this a lot sooner than I had anticipated, and a lot sooner than I had wanted to. So then I have to call the entire family. And then somehow, like, because my mom talks, my mom talks a lot. She’s a gossip and a talker. And so it branches out to the extended family. And then one of my cousins posts on my Facebook wall, “Bro! I heard what happened! I’m praying for you! Oh my God, this is scary, like God has got you.” And I was like, “Noooooooooo.”
Brianne: Classic, right out of Facebook.
Mugabi: Exactly! And now I start fielding, like calls left, right and center from everyone being like, “What’s this guy talking about on Facebook?” Like, “Yeah, I think I had another stroke” and them being like “Whaaaaa?!” Like, it’s just a lot of emotional labor that you have to do. And like, I’m not, you know, like, this is not the time for this. Like, give me some time, you know, to like deal with whatever I’m dealing with, because I still have no idea what’s going on. Give me some time and then, and then we can talk things out later but thanks to my cousin just outing me on Facebook.
Brianne: Oh my goodness.
Mugabi: That could not be helped, so I’m doing a bunch of testing at Michigan, the doctors are pursuing a bunch…
Brianne: So are you going back in during the day, basically for imaging and then going home kind of? Like as they could accommodate you I guess, or make appointments?
Mugabi: Yeah. They were actually pretty quick with the appointments, which I appreciated. It was largely because I was a student, cause like, you know.
Brianne: Yeah. It’s a big hospital.
Mugabi: Yeah, mmm hmmm. And so I’m doing that. And I’m also trying to figure out how to like, and also having to tell all my professors, because it’s finals week. Literally could not have happened at a worse time. Like it happened the day before finals week. And so, having to like email all my professors to say like, “Yo, I just had a stroke.” Like I’m trying to figure stuff out. But like I’m not about to walk into finals, you know?
Mugabi: Like I need some… and they were all surprisingly accommodating, like every, all but one of them. And that one was always like the, you know, like uptight professor. So like, I was like, it would be him. All but one of them were like, “No worries. You got an A.” You’ve been amazing. And I was like “Thank you!” You know? Like, because having to worry about that one, that was uptight and was like, he told me that I’ll just reschedule the exam for the spring semester, which I was like, all right. That’s like, you know, accommodating well, which I appreciate, but it also just gives me another thing to worry about potentially in the future.
Brianne: Extensions are like great. And also somehow worse, usually.
Mugabi: Mmm hmm. And so, I was like, okay, so I’m all set on classes, which is great. I emailed my boss cause I was a research assistant while I was there, working for this like forestry project. And I emailed my boss, told him what was happening. He was like, “No worries. You’ve done great so far.” Like take all the time you need. And I was like, great! So like, but like I didn’t have income coming in. Because I wasn’t working anymore because I was trying to figure out health stuff. But I was lucky that my family were able to financially help me out. And also the fact that I had the University of Michigan student insurance, which is great. And I combined that with my dad’s UN insurance. And so the combination of the two made me pay like next to nothing, honestly.
Brianne: Yeah. Which is great.
Mugabi: So yeah, just a bunch of followup care. And then a week later, literally a week, like an exact week, like the following Sunday, again, “aaaah!” I was like, “what is going on?!” Because I was literally…
Brianne: Send it back!
Mugabi: Sitting down, I was sitting down in the same, cause I hung out in the basement a lot. And I was sitting down in the basement and I think I was like watching a movie or something or like just browsing Facebook. But like, I was like, same like day and oddly like same time, like evening each time, like both. And so then I was like, oh crap. And so I run get my roommate and I’m like, “I think I’m having another one.”
Brianne: Yeah. Like, “I don’t know, man.”
Mugabi: Yeah, my roommate drops me at the hospital. And then the doctors are like, “what’s going on?” I was like “I think I’m having another one.” They’re like, “huh, that doesn’t fit in with our testing. That doesn’t make sense. Huh.” And then, they like put me under observation. And then they ended up diagnosing me with dizziness. And they were like, “next time you come back, you have to have more serious symptoms.” And I was like, “I told you I’m experiencing the same exact thing.” And they were like, “yeah, but physically you’re not displaying that.” And I was like, “huh.”
Mugabi: You know, I’m like, yeah, like you’re telling me a lot. I mean, you’re telling me that you know nothing about the brain, honestly.
Mugabi: Because you’re saying that I have to physically manifest severe, like my eye and mouth have to be like paralyzed to the point that like, I can’t even talk properly for you to say it’s a stroke. You know?
Brianne: Yeah. Yeah. And that you’re not willing to either one, believe my self reporting, which huge problem overall in medicine and how it works right now that I could not begin to solve in this pointform list I’m trying to make. But like also, yeah, like this is your third stroke. At the end of the day, like they want you, what they are indicating when they behave this way is that they want to just wait until it gets worse, which is how this often works. Like, and it’s like this isn’t a better outcome! Like refusing to listen to someone until you can observe something that they’ve been describing for X amount of time is a bad plan, but it’s cheaper. So here we are, among other things.
Mugabi: Mmm hmm.
Brianne: That’s not the only reason it happens. Okay. So they told you you were dizzy.
Mugabi: Yeah. And then the doctor says, “I think you’re having mini seizures, so let’s put you on anti-seizure medication.” Because I’d also been having convulsions. So, and like this whole time, like after stroke two and to stroke three, like my body was going through it. Like I’d randomly go blind in that eye again, but like, I was like, what’s the point of going to the doctor, if they’re just going to tell me I’m busy again, you know? And so I’d just wait and then like 30 minutes later, my eye would kick back in again. And I was like, I don’t understand what’s happening, but nobody has any answers for me so I’ve just got to wait for the tests.
Mugabi: I would have like convulsions, a lot of pain, a lot of like weird sensations, like heaviness and like heat through my body, until they were like, “we think you’re having mini seizures.” So they put me on this anti-seizure medication called Keppra. It was one of the worst times of my life, because I put on, I get put on Keppra and then I go back home. I’m hanging out and, I mean, like, I still had all the like sensations and everything and the seizures and the pain. And I was like, I don’t know what’s going on, but I’m just waiting for the test results. And so trying to power through. My sister ended up, like after the first stroke, she took time off work and came up to, like look out for me, which I appreciate. And then she, was like, “you should come down to DC since you’re on your winter holidays anyways. And while you do all your followup work, you can come down to DC for like a couple of weeks, and then I can come back with you and work through a followup work with you.” And so like, and like having her as like an advocate is like the only reason I’m alive.
Mugabi: But it sucks that it was her because like, she’s a Black woman and they don’t listen to her either. You know?
Mugabi: I wish I had like a white man friend who I could like drag with me to all little appointments and just be like, “talk!”
Brianne: It’s a necessary service that needs to exist. Just like, lend out your privilege to people in healthcare! Thank you. Hate that it’s needed, probably would do a lot of good.
Mugabi: That would honestly be amazing, like a volunteer service that somebody should set up. Like your white friend, white man friend.
Mugabi: The Keppra eventually after like a couple weeks ends up making me heavily suicidal.
Mugabi: And I remember hearing voices, and there was one voice in particular, it was all hallucinations in hindsight. But like at that moment it was real, you know? Like you don’t know you’re hallucinating when you’re hallucinating. And so like, I remember being in my co-op and like going to make a sandwich, and all of a sudden, like my body’s like taken over, by something that sounded like exactly like Gollum from Lord of the Rings. This is like, terrifying.
Brianne: Yeah. It’s like, visceral.
Mugabi: And like, Gollum just keeps yelling in my mind, “kill yourself, kill yourself, kill yourself, kill yourself, kill yourself.” And I’m like, what’s going on?
Mugabi: Um, and then before I know it, like I’m trying to make a sandwich, but before I know it, I have the knife up against my wrist and I’m about to slit myself. And I end up calling my sister and being like, “I don’t know what’s going on. But like…” And then like, as I’m trying to talk to her, Gollum is like responding to me. And Gollum is like, “why are you such a baby going and crying to her all the time?” You know, like, “why don’t you just kill yourself?”
Mugabi: And like, as my sister is trying to talk to me, Gollum is yelling over her, “kill yourself, kill yourself.” So I can’t even hear what she’s saying. And I’m like, “I’m sorry, I’m trying to hear what you’re saying. But all I hear is Gollum telling me to kill myself. And I’m very confused right now. And I don’t know what’s going on.”
Mugabi: My sister is freaking out.
Brianne: Yeah. This is a new and extremely troubling experience.
Mugabi: Yeah. She was like, “call your doctor immediately.” I call my doctor. My doctor’s like, “wow! That’s fascinating! That only happens in like 5% of, wow, you’re such an interesting case.”
Brianne: You’re like, “I’m a person! I’m a person!”
Mugabi: Is that really your reaction?
Brianne: Oh my god.
Mugabi: Like, I have Gollum yelling in my mind to kill myself and your reaction is “that’s fascinating?”
Mugabi: And so, she’s like, “oh yeah, yeah, yeah, you should discontinue that.” Okay. But like Gollum takes a while to leave my system and it doesn’t go without a fight. Like I remember I was trying to study for that, like extension exam that I had to take. And I was studying on like the 10th floor of one of those buildings on the quad. And like, I remember like studying for my economics exam. And then I remember blacking out, next thing I remember I had one foot out the window and I was about to jump. And I have no idea, like, you know. Like I was not in control when I made that move and I was like, what’s going on? You know?
Mugabi: And so I immediately like went back to the co-op and I just like told my roommate. I was just like, “just watch me.”
Brianne: Like, I need a lot of support right now.
Mugabi: Yeah. And until this medication is out of my system, I can’t trust myself or my body. So I need you to just watch me and make sure I don’t do anything. BEcause if I do, I’m not in control. Eventually it leaves my system. And then the search begins, of every single test under the sun, every single medication under the sun, every single doctor under the sun. And I honestly haven’t really got answers since, and I’ve been progressively worse.
Brianne: Mmm hmm.
Mugabi: Yeah. But no, it’s been up and down. It’s been up and down. Cause like 2015, my health was technically better than it is right now, but I was not as good at coping with it because I thought I was going to die. Cause like for the entire year of 2015, all the doctors kept on saying “you’re not going to make it to see 2016.” And so I was like, all right. So I’ve got to start preparing for my death. So I started doing what I had to do to like settle my affairs. But when I made it past that, and when I started like regaining some functionality, I pushed myself as I had been trained to do.
Brianne: Right. This is what we do at this point.
Mugabi: Yeah, but then I’d crash and then I’d try to figure something else out and then I’d crash and then I’d try and figure something else out. And it’s been the boom and bust since.
Brianne: Yeah that’s very relatable. And so, yeah. So there were two strokes and at the beginning it was like, your symptoms were kind of unpredictable, it sounds like, sporadic, et cetera. And so it’s like, there’s two things going on, which is like one, can we understand and maybe anticipate and maybe manage the symptoms to like find a baseline. And then also, yeah. Like, is it possible to find a baseline? There’s like a long game and a short game kind of happening at the same time, I feel like, in recovery situations. So. Okay. And so that was, and that was in Michigan. And then did you move back from there? I know, cause it sounds like this was in the last, I feel like I have no sense of time. Sorry. It’s 2021 right now. So this was in the last five-ish years, five or six years ago, is that right?
Mugabi: Yeah. The two strokes happened at the end of 2014.
Brianne: Okay. Yeah.
Mugabi: Yeah, yeah, yeah. And so, I was in Michigan from like August/September-ish until February of 2015. Cause in February 2015, like I’d done all the tests and like the doctors were not helping me. And my sister was like, “why don’t you just move in with me and we’ll continue your follow-up care, rather than you like having to deal with all this BS on yourself.”
Brianne: Right. Cause it’s so much to handle.
Mugabi: Yeah, exactly. And I was like, appreciate you for that. And so I moved in and took a leave of absence from Michigan. And I like, as much as like hate on Michigan’s sense of elitism, I will forever like accredit and like stan and stand by the school for what they did for me. Cause one of my professors told me about a grant that was available for students who have medical issues. I applied for it and they gave me like $6,000 just straight up. No questions asked.
Brianne: That’s great.
Mugabi: But yeah. And so like that, that went a long way to medical bills. Because like, even with those two insurances, my copays were pretty high. Cause I was doing a lot of expensive imaging and testing. But with that $6,000, I was able to like pay for like every Uber to the hospital, rather than having to try and navigate the subway in DC with all my disability. Because being like invisibly disabled and trying to navigate public transport is a nightmare.
Mugabi: And I started using a cane partially as an ambulatory aid and partially to just signify to people that, you know, like…
Mugabi: Like give me some, like, you know, space.
Brianne: Yeah. And like it’s hard, cause it’s like, “Hey, you might not know how to interpret my gate or some things about me.” And instead of having an interaction, if I carry this cane, you’re going to make a bunch of assumptions and they’re going to be much closer than the assumptions that you make if I don’t have the cane, so let’s use it. Yeah.
Mugabi: Exactly. One time I was on the Metro and this… pregnant women annoy me because they feel like they have an authority. I mean, they feel like they have like a, what do they call it? Like, they’re the only ones dealing with something.
Mugabi: This pregnant white woman, like walks up to me. I was sitting in like the disabled seating. She walks up to me and she literally like, just stares at me and barks, “can you move?!” And I was like, I look up at her, and like a million thoughts racing through my mind. Like, do I even want to try to explain? And like, the entire train is staring at me, like turned around and staring like, “what’s going on here?” You know?
Brianne: Yeah, “what did you do to upset this lady?!”
Mugabi: And she’s pregnant. So she’s playing all the sympathy cards. I’m a Black man. I’ve got none of the sympathy cards, you know? And I was like, if I even try to explain, like, this might get out of hand. And honestly I might get arrested and I don’t want to deal with that, I’ve already had more than enough racist run-ins with the police. Like I’m not trying to, like… Like, I was just on my way to like, what was I doing? I think I was doing like some volunteer gig. And I was like, this is too much. So like I just stood up, walked to the side and then she goes [big sigh] and then like sits down. And I’m like, I’m feeling some type of way about it, but I can’t speak about it because she holds all of the power in the situation. Like, there’s been more than one too many instances of white women, like utilizing their privilege to like kill Black men. don’t want to be another Emmett Till. And so like I just shut up, look down, and stand for the entire journey, which was hell on my body!
Mugabi: It wrecked my body. And it’s like, why do I have to put up with this, because of the way racial dynamics work and the way privilege works. So I started moving around with the cane from then on, because I was like, this is too much.
Brianne: This is not a safe situation. Yeah. And it’s like, you can see in interactions like that, it’s like how many things have gone in to construct this? Because it’s like, aha, there is this dynamic where this white woman is trying to use her power… because if the problem is that she’s pregnant and she’s uncomfortable, then a reasonable person who is pregnant and uncomfortable and not enacting any other bullshit might approach and just be like, “hello, do you need this seat? Or do you happen to be sitting in it? Might I sit in it because I’m uncomfortable?” Like, a really easy way.
Mugabi: And why did you pick the one Black person in the disabled seats? The five white people, you completely ignored.
Mugabi: You came and singled me out.
Brianne: Right. And like, it’s like, there’s the whole thing happening. There’s the approach. And then also it’s like, what’s so… that you described that fucking sucks about the dynamic is it’s like, and then you’re in a position where you’re like, “okay, well I know that I’m disabled and that I would really benefit from this seat, but my only option is now to perform not being disabled in order to be like externally safe in this environment, which is obviously not a safe choice when I needed the seat in the first place.” Like these things really go… I mean, oppression goes hand in hand, right? Like, ughhhh. So, Uber!
Mugabi: When I told that story to my brother like, he was like, “why didn’t you just say something?” And I was like, “you don’t understand what it’s like, you know, like you’ve never had to live in my body,” you know? And like that situation could have easily ended up with me dead. You know?
Mugabi: This has happened time and time again, throughout history in the United States where some random white woman says something about a Black man and the Black man was completely innocent and the Black man ends up dead. I don’t want to end up dead.
Brianne: Right. And like, yeah. And it’s easy for anybody outside of that position – anybody who’s not disabled, anybody who’s white, anybody who is at the intersection of both of those things – to be like, “well, why wouldn’t you behave this other way to make things better in the future?” And it’s like, because there will be no future. Like that’s not, that’s not the calculation in this scenario. It just isn’t.
Mugabi: Like Emmett Till was disabled. That’s why he tripped, you know, like that’s a part of the story that gets left out time and time again, like he was going through the same exact thing that I’m going through.
Mugabi: But people always say, oh, Emmett Till is Black. And it’s like, yeah, but he was also disabled and that’s the reason that he tripped. And that’s the reason this white woman got him lynched.
Mugabi: It was because of his disability. That needs to be included in the conversation. Being Black and disabled is very, very different from being white and disabled.
Brianne: Yeah. Yeah. And there, yeah, I don’t even need to add to that, but if this is news to anybody who is listening, it is a great thing to learn about how systemic racism and systemic ableism are just inextricable from each other, especially in the history of this country. This country that I am in right now, I guess, we’re talking about, but you are not in at this moment. Yeah.
Mugabi: Nah, I left them. Like literally three months before Trump got elected.
Brianne: Okay. We’re opposites because that’s when I moved back from Canada and that was a mistake.
Mugabi: Oh. That’s when I moved to Canada!
Brianne: There you go! Yeah. I left in yeah, August or September of 2016, right before. That’s funny. Well, we switched.
Mugabi: I moved to Toronto in September of 2016.
Brianne: Yeah! So Canada is a slightly different place than the United States. Healthcare is definitely well, healthcare is both very different and very similar, I think, between the two countries, if you had any time there. Yeah.
Mugabi: Yeah. Yeah. I was in Canada, for like three years on and off. And like, it’s very different, because I’m not a PR, I’m not a Canadian citizen, so I don’t have access to all of the benefits that like Canadians who are citizens or permanent residents do. And by the time I moved to Canada, I had been through like an intensive, three week program at the Mayo Clinic where like, I was able to like, get the graded exercise and also just like be surrounded by other people dealing with chronic pain. Cause it was a pain rehabilitation center. And that had a lot of problematic narratives and a lot of problematic stuff that they viewed. Like they were very, very, very anti drugs of any sort to help manage the pain. Like they tried to take me off my muscle relaxants and I was like, this is really helpful with my muscle tone, they help me fall asleep, they help with my spasticity. And they were like, “but they’re an addictive substance! Look at what they do to people. Look at how people die.” And all this stuff. And I was like, “I’ve been on this since I was 11 years old. It’s literally never had a problem.” Just because like you have these statistics doesn’t mean, you know.
Brianne: Yeah, again and again. And again, like your probability statistics probably don’t account for all of the outlying circumstances in my body. Like it’s fine.
Mugabi: And also they were freaked out over the dosage, but like, like I’ve been on them since I was 11, you know. Like my muscle relaxants, like, if I was to give them to an able-bodied person, who’d never experienced them ever before… like I remember my brother was having trouble sleeping cause he has bad insomnia and I gave him one. I mean, knocked out for like 14 hours and he woke up, he was like, “oh my God. That was amazing.”
Brianne: We have different bodies.
Mugabi: Completely! Because that’s what the Mayo Clinic were expecting me to like, you know. But I was like, like I’ve been on really strong like prescription stuff as a child. Like my body is very, very different and has a very different degree of tolerance. Like I remember I was listening to this Drake song and like Drake was talking about taking the same muscle relaxant that I do to get high while he was on a plane. I was like, I don’t experience any high from this!
Brianne: You’re like, “this is the thing that makes us different, Drake. Our lives are different. This is why.”
Mugabi: Drake cannot relate to me.
Brianne: Yeah. Drake who played an iconic, disabled character in his pre rapping career. So…
Mugabi: Like the many, many able-bodied people who take away roles from us.
Brianne: Yeah, many able-bodied people who played wheelchair users before him.
Mugabi: it. It’s so annoying, like goodness. Or they got Oscars for being queer, or for like, oh…
Brianne: Yeah. Performing, performing what it must feel like. Hypothesizing about oppression. Yeah. Yeah. Okay. I think we’re also, we’re getting close to two and a half hours, so I want to be kind to both of our brains too. It sounds like we’re kind of more or less up to the present cause we’ve hopped around so much. Are there any big things that we haven’t talked about about disability and healthcare and just like all of these things, how they intersect, whatever it is, anything we haven’t covered that you know you want to say? And it’s okay if the answer is no, cause we’ve covered a lot. But I do want to hear your book, to be clear, also.
Mugabi: Yeah, yeah, yeah sounds good. Yeah. No, nothing is coming to me. And honestly like like my brain operates better with direct questions.
Brianne: Yeah yeah, that’s fine. I just, sometimes people come in with notes. They’re like, make sure you say this thing.
Mugabi: Okay. No, no, no, I don’t
Brianne: Yeah, no. So that’s okay. People usually don’t, but I think it’s like, our brains are all different, like you say. Okay. So that is like, it sounds like kind of the health narrative, but also you’ve been talking about writing the whole time, from your handwriting to your love of reading. And so at… not at some point, I’m sure you’ve been writing the whole time, but at some point you begin writing professionally in some way. How did that transition happen around your health?
Mugabi: happened because of my health, honestly.
Mugabi: Yeah, it was directly because of my health, because writing was always plan B, my entire life.
Mugabi: And it was always, it was always in my mind side hustle. Because like both my parents came from homes with like nine siblings, in rural Uganda, with like subsistence farming backgrounds. And both of them were able to get scholarships and work their way through school to be able to put themselves in a better, like financial situation. And they all supported all of their entire siblings, paid for all of their entire siblings’ educations, put them up like while they were like job hunting, and like put everyone on their back. And they were able to do that, due to the opportunities that were afforded them and their hard work and dedication. And so they were always of the mindset that education is what got me out. Therefore, I have to stress to my kids, education, education, education, education, because I wouldn’t be where I was without it. And my dad was always telling me that like, cause my dad was very aware of the racial dynamics that he occupied. Because he was a Black man in a senior position, in a place where there were next to no other Black people. And he saw the way people treated him, day to day, at all these conferences and stuff where like, people would be surprised that like, you know… his name did not help things. Cause my dad wasn’t, my dad’s name is Ladislaus.
Mugabi: Yeah, because he was named after the Polish missionary that converted his dad to Catholicism.
Mugabi: And so like everybody sees Ladislaus and does not expect this Black bearded man to be walking in. Like so many Polish people would get so confused. Cause they’d expect like, “oh my God, there’s a fellow Pole here.” And they’d be like, what is going on?
Mugabi: And he married my mom, whose name is Levocardia named after a separate Polish missionary who converted her dad.
Brianne: Oh my goodness. It looks like there’s a pattern here.
Mugabi: Yeah. Shout out colonialism.
Brianne: Yeah, really. Whew. Thank you Poland, in this case, but all the same instinct.
Mugabi: Mmm. And so my dad was always like, very aware of the way that he moved through the world. And he tried to pass on to us like the world is unfair, and you’re gonna like, you know, be set up against it, just due to the color of your skin and nothing else. And like that sucks. But you can use some things to help, like fight against that. And his tool was education and he tried to pass that onto us. So very early on, both my parents stressed that like, we see that you’re doing the writing thing, writing your stories and stuff like that. And like, that’s great. Keep on doing that. But that can’t be a full-time job.
Brianne: That’s not a real job.
Mugabi: Yeah, exactly. Like do that on the evenings, do that on the weekends, have fun with it. But you need something practical to actually pay the bills. And my mom stressed that it should be STEM, because she came from a STEM background and she was like, “STEM is the way to like secure yourself financially.” Because she always wanted one of us to become a doctor. Which like, [laughs]. After everything they’ve done for me, no thanks.
Brianne: You’re like “my mind, uh… soured on that idea.”
Mugabi: And so writing was always the plan B for me. And it was always seen as a side hustle. And so like all those like short stories and stuff, and like poetry that I’d write as a kid would like be for fun. But like I, and I always dreamed of being an author and dreamed of like being published and stuff, but like I always saw it happening, never being my primary career and always like having a nine to five and then I’d write on the evenings and the weekends.
Mugabi: But because of my strokes, I was limited in so many ways that that nine to five was no longer accessible to me.
Brianne: Right. And the idea of having a nine to five and then a second job on top of it…
Mugabi: Yeah! That’s a lot.
Brianne: It’s like, oh. And I know people do it, but often not people who have damage or like TBIs or other kinds of cognitive impairments. It’s a whole other thing!
Mugabi: Yeah, no, it requires a certain level of ability. And so when I saw that, like, like when I was doing my leave of absence and going through all my recovery, I was like, I don’t think I’ll be able to go back to school. Because as much as I wanted to, like my body, I knew the level of ability that graduate school and working part-time as an assistant would necessitate.
Brianne: Right. Yeah.
Mugabi: And I knew that my body wasn’t capable of that.
Mugabi: And so I was like, maybe it’s something I can build up to eventually for the future. But right now it’s not a feasibility.
Brianne: And do you think it made a difference that you had obviously a very different, but a past experience of recovering from a stroke? So you had like some idea about what might be involved even though of course, like nothing is predictive?
Mugabi: Yes, it did help. Because I find myself doing a lot of flashing back and like, trying to like, see like what worked then versus what works now. And like, realizing that they were completely different incidents and affected my mind and body in completely different ways. And that was, I think, one of the most difficult things. Because it would have been so much easier to deal with if the second and third completely paralyzed the right side of my body and and it was the same exact recovery process, because like I already did that, you know, like I could easily do that.
Brianne: Then you would have known.
Mugabi: Yeah. And so I think the differences was what was so difficult because the things that worked before weren’t working now, and it was like a difficult learning process.
Brianne: Yeah. Yeah. And it’s always hard when things don’t work because it’s like, did I do it wrong? Probably not, but it feels that way. Like, yeah. So, yeah. So you realized you were like, I don’t think that full-time school or full-time work is necessarily going to be a good idea for the body that I have. So plan B.
Mugabi: And so one of the things I did when I was trying to like work my way up in terms of like, trying to regain functioning during recovery was I started volunteering at a couple of different organizations in the DC area. Just to like try to put my body out there to see if I could build up the hours that I was capable of leaving the home and doing some sort of task. And I hit 20 hours and I could not, I could not do any more than that. Like 20 hours was my peak. And I tried so hard and I pushed myself so hard and my body was just like shutting down, going into seizures. And it was telling me, no. It was telling me like, this is my limit, you know.
Brianne: Yeah. We’re not doing this. You can listen or you can not listen, but it’s not going to change anything.
Mugabi: Exactly. And so that was when I was like, all right, nine to five is 40 hours, so I don’t think that’s going to be feasible. So I need to figure something else out. And during this whole time that I was in recovery, I started writing a book. And the book was like sorta like, you know, like a project, a way to pass the time, get some writing done cause I enjoyed writing. But also it was like very much a form of catharsis, and just like a way to process everything I’d been through over the past. Because it’s designed as a series of conversations between myself and a character called Philomena, who is representative of the woman that I was supposed to be. Cause when my mom had the ultrasound and was like gender reveal, the doctors told her to expect a baby girl and she was super happy, super excited and chose the name Philomena for that baby girl. And she’s told me that story in my whole life, where Philomena is who you’re supposed to be. And so I just thought it would be interesting. Yeah, exactly. She dressed me up in all those…
Brianne: Yeah, I did a gesture of like a parallel person kind of, for people listing.
Mugabi: Exactly, exactly. And, so like I did a thought experiment of like how differently would my life have been? Like if I was born a girl, because like everything would have shaped me completely differently than it has now. And like I went down exploring, like would I have had a different like… and also what would happen if I was born able-bodied as well? And like what sort of career path I would have gone down, and how the world would have shaped me differently. And so, the development of like a series of conversations between myself and Philomena. And I chose to center it starting December 2014 when the second stroke happened and then ending in December 2015 on the one-year anniversary of my second stroke. Cause there was a lot of ups and downs during that time. And there was no miraculous recovery and there never has been. And I see so many disability stories like centering around that narrative of overcoming and being like, you know, like, yes, this person had cancer and was going through it, but now they’re healed! And they can run marathons! And they’re amazing!
Brianne: It’s over!
Mugabi: And I was like there are a lot of us who don’t overcome, you know? There are a lot of us who don’t like get back to whatever our prior baseline may have been. And I don’t see that story being told enough. And I don’t see, especially being told by someone who looks like me.
Brianne: Yeah, we need so many more stories about this. And it’s like in the chronic illness space, in the disability space, there are people writing, of course, but most chronic illness memoirs especially are written by like a certain kind of white woman. And I really appreciate them. I’m a white woman. I relate to them a lot, but there’s also a really strong pattern in what is, and is not available and easily find-able for people who don’t get better, like you say, it’s like such a small genre, so thank you for contributing to it. And also, yes! What a huge problem, publishers who are listening. I don’t think any publishers are listening, but maybe they are.
Mugabi: Yeah. Because like, I don’t think I would’ve got published… I don’t think the book would have got published if I’d taken it to a major, honestly, because I ended up publishing with this tiny little indie press, which was amazing for me. But like, I get so much feedback from so many disabled people about how, like the way that I designed the texts. Because it reads like a text message conversation. You see Mugabi, Philomena, Mugabi, Philomena, and we’re just chatting. And then going into like my diary entries and my tweets, and it’s like, very like millennial, but like, that’s what I am. And like a lot of people who are chronically ill and who do manage various different disabilities have told me that like, it’s the first book they were able to read in years because I designed it accessibly. And I was like, yeah, that’s because that’s the only way I was able to write it.
Mugabi: You know? Like, I was incapable of writing the like heavy literary prose that like, you know, with all the jargon and like the really dense texts. And I didn’t want to write that because I wanted people like me to be able to read my work and like non-English speakers to be able to read my work. You know, like I deliberately set out to design as accessible of a text as possible within my means. And a lot of times, a lot of like, people, like I’ve had a lot of people and a lot of bookstores and places telling me like, oh, this isn’t writing, you know? Or like, or like, what is this? This is like something, a child would write.
Brianne: Like it’s not serious. Yeah.
Mugabi: But then it’s like, but then I was nominated for this award for speculative fiction by African authors. And so it’s like, clearly there’s something that you’re not seeing, you know.
Brianne: Yeah. And like your evaluation metrics are optimizing for something that I am not optimizing for. Like whoever you have in your mind as a reader isn’t who I wrote this book for. So think about that.
Mugabi: Exactly. But it’s been interesting watching people flip and like, now that I have achieved some success with the book, people are like, “oh wow, it’s amazing.” And it’s like, you’re the same person who said that, like it was something a child could have wrote three years ago. And now that I got all these accolades, you’re like “oh, wow!”
Brianne: Yeah. Yeah. There was external validation. I always knew! Yeah. Yeah. And it’s like, I feel like, so I had a… I’ve talked about this on the podcast, so anybody listening, if they listened would know this, but like I had a pretty major crash right about a year ago now. And it’s like, I lost a ton of cognitive function for a few months, at least. And it was like, I’m done with screens, I’m done with long form reading for whatever reason.
Mugabi: Did you have a crash right around the time COVID popped off too?
Brianne: Yeah. It was, I had it in April. So it was a month after. I’ve had…
Mugabi: Yeah, cause I had one in March.
Brianne: Yeah. I think a lot of people, it’s like no matter, kind of how things ended up playing out in your region. Everything was so stressful last March, as we were trying to anticipate what was going to happen that like, I think a ton of people had crashes or flares and obviously life did not get easier for a lot of people in this time so it’s been like external stress, risk stress, whatever. Right. But yeah. So yeah. It hit you in March, it hit me in April. Yeah. And it was like, all of this stuff is happening and all of this big news was happening, and I couldn’t watch the news, which I think is common for people who have cognitive symptoms. And it’s like, I can’t watch the news, I can’t read long form reporting because it’s too complicated. Like my main source of news this last year was probably a US reporting site called Axios. And I’m like, I’m not even sure what all of your political biases are, because I don’t know you that well, which bothers me as a site, but like they do mostly bullet point reporting. And I think they’re like, we make news for like busy execs and politicians who don’t have time to read long and complicated things. And like, that’s the angle. But as I’ve been like paying attention to kind of what sources seem to be available to me and people in my community, because we all have this kind of, or many of us have this problem. It’s like, oh, there really aren’t a lot. And there’s a huge attitude about it that’s like, “well, why don’t you go read a book?” It’s like, because books aren’t accessible to me right now. Like, why don’t you make your content digestible? That’s my question.
Mugabi: Mmm hmm. It’s not that hard, I have to say. Like it’s not that, but like the thing with like able-bodied people is they don’t care until it affects them. Like COVID was like the biggest slap in the face because it’s like, how many times was I like, trying to figure out a way to work remotely because I can’t come in every single day. And then all of a sudden, now that it’s affecting everyone, it’s like a given. And it’s like, like jobs, which literally said you must be able to come into the office every single day, or you must be able to lift 30 pounds when it’s like, I’m not going to be lifting anything in this job. Like, why is this a part of the job requirement? Those same jobs are now completely online, work from home. And it’s like, you just showed that you don’t care about us because you only care about it when it affects you.
Mugabi: And the minute it stops affecting you, you’re going to switch back to the same old behavior and that’s going to be sad to see.
Brianne: Yeah. And I think then that’s kind of started happening. Like, I know with some telehealth in some places even, it’s like, oh cool, now we just have to go be at risk again. Which this is another one where like, one, I don’t know when this will come out, so circumstances will probably have changed a little bit globally, but like right now in the United States, it is still… healthcare does not feel safe to go to in most places, I think. And like every country and every region is so different for this right now. But the common theme is what you just described, I feel like. It’s like, yeah, you accommodated able-bodied people and then you’re taking them away again. As soon as you don’t feel pressured to do that or something.
Mugabi: Exactly, exactly. Like I’ve been putting off healthcare for the past like year. Just because like, I was supposed to, like, I was trying to like get back to this hospital in Thailand that did a lot of my initial follow-up care after the first stroke. Because things were getting worse, health wise and I was trying to figure it out and I tried everything under the sun and nothing was helping. And so I was like, maybe I just need to go back and like, ask them a bunch and get like two weeks in front of doctors uninterrupted to ask them every single question that I have and be in front of doctors who will actually listen to me as a Black man. And then COVID hit. And since then I’ve just been like, you know, riding it out Yeah, the border was closed for like nine months, you know, like I couldn’t have even gone if I wanted to. And then once the border was opened, I’m like, do I really feel safe flying into a hospital, for like a couple of weeks with my mother who’s 60 and diabetic, you know, like as my primary caretaker? Like, no, I want a vaccine in me before I do that.
Mugabi: Cause I’ve seen way too many people go in for like routine things at the hospital and walk out with COVID. And I’m like, yeah, that’s cause that’s the number one place where COVID is, in a hospital! That’s where everyone with COVID is congregated! Like that’s the riskiest place to be as as a high-risk person.
Brianne: Yeah. Yeah. There’s a lot. I’ve been tweeting about this a bunch lately, so you might’ve seen it, but I’m like, I just have this feeling that in like 2024, I’m going to finally start to process how just angry this last year has made me. Both because of stuff this and like the impact on my own health and then the impact on the health of the community, because I’m seeing stories like this like every day, because of the void. So it’s like, I just, I know what people are running into. And I know I keep saying different countries, but it’s because like, literally it’s like, there are people in every… not every continent, there are people on four or five continents sharing their stories all the time on Twitter. And it’s like, we’re in different places, they’re being managed differently. But like the theme is that high-risk groups are being left behind in whatever plan. And maybe somewhere is doing this really great, and everyone there is so happy that I just don’t see anyone from that country on Twitter, in which case like much respect to whatever country is taking really good care of their disabled people. But it’s been a real theme and it’s been such a hard year for a million reasons.
Mugabi: Definitely. One thing that I do appreciate though, about being in Uganda, is that we do have the pandemic far better contained than the majority of the world. We have like 10,000 cases 350 deaths across a population of 40 million, which like that’s the same population as Canada, you know, and like compare our numbers to Canada’s numbers. And like, you can see that we’re doing something right. And like all these, like Western scientists are like scratching their heads and being like, “how is Africa doing so much better at this than Europe and North America?”
Brianne: “What a novel case!”
Mugabi: It’s obvious. Yeah! And like, people say that like, Africans have higher immunity and I’m like, that’s not… Like, first of all, that’s racism, because that goes back to the whole, like, I mean… that’s the reason that it took me eight months to get anything stronger than tylenol prescribed, because they were like, oh, you’re Black, you’re a drug seeker, you have a higher sensitivity to pain, you know? Like, that just goes into so many racist myths. But it’s like, like I can see clearly why we’re doing so much better, and it’s because we have experience handling epidemics. And y’all don’t! When’s the last time the United States got hit by an epidemic? Ebola and the whole country freaked out and didn’t know what to do. I was like, what is going on? Because Ebola outbreaks happen in Uganda like every other year, and the whole country moves into motion. Quarantine the area, everybody has no physical contact with anyone. Like, even in church, the minute there’s an Ebola outbreak. You don’t shake who you’re saying like “peace be with you” to.
Brianne: Yeah. Like it’s serious. Yeah.
Mugabi: Yeah. Like everybody moves differently until the outbreak has been, you know, dealt with. And then you can go back to moving the way you used to. And it’s like, there’s not a culture of that in the US or Canada or Europe, because you’ve never had to deal with an epidemic. It’s like, you know, like, it’s just like, this is all new to you.
Mugabi: So many people are surprised, but it’s like, we just have experience. And y’all don’t. Like, what you should be doing is learning from us.
Mugabi: But you’re like, “oh, how did these people, like, how could we learn from these inferior people?” You know, like, it must be genetically…
Brianne: Yeah. It couldn’t possibly apply to our situation.
Brianne: It’s amazing how much it’s the same instinct of just like, “oh no, we are the ones who know the most. So anytime someone appears to be demonstrating knowledge that has outpaced ours, we must assume that that was a weird fluke that we can find an explanation for.” Instead of just like taking the more obvious answer that yeah, people have had an experience and learn from it and that we could also learn. And it’s so wild, I guess, watching like the UK and the US where it’s just like these two countries are imploding because of this attitude of like, “no, we know best, we can’t take any input. Like why would we do that? Let’s just continue this attitude into the position that we’re in now.” I could rant about the US for a long time, but I was going to say that earlier. I’m sure it must, it’s like it… the pandemic happening impacts everything and daily life must be really different if local risk factors are lower. And then also as a disabled person, the impact is still so present when you know that your risk is higher and you have to think about that in every single one of your decisions as long as there’s a pandemic happening. Yeah.
Mugabi: Exactly. Like I haven’t been outside in like, outside of this house, in like close to a year. I think it was like March, late March of last year. That was my last time, like being able to leave the house because my health has deteriorated so much that, like, I can’t walk any more than a couple of steps now. So like I can walk to the bathroom. I can walk to the kitchen, you know, but like, I can’t just like go outside for a walk or I’ll crash and like, my legs will start shaking and would give out from under me. I’ll go into a seizure. So like, I just have to limit activity and stay within my energy envelope.
Mugabi: So like, I don’t know what the actual situation is like physically outside because I see it on the news or something, or like on Twitter.
Brianne: That’s how it’s been for me too, with the April crash.
Mugabi: Yeah, it’s a weird experience. Or like, you just rely on like feedback from people in your life who do go outside.
Brianne: Yeah. You’re like, “how is everybody out there?”
Mugabi: Mmmhmm. But like I heard on the news that like, if you’re seen without a mask in public, you get warned, and then if you continue you’re arrested. Which like is like a massive consequence, but it keeps people in line.
Brianne: Just escalate.
Mugabi: Like that’s one of the perks of having an authoritarian in power is like, they can handle stuff, you know? Cause like…
Brianne: they use their authority.
Mugabi: But like, it keeps people in line, which I appreciate.
Mugabi: Cause that’s why the numbers are so low.
Brianne: Yeah. Yeah. 2021. I hope that things improve or continue to improve for all of our access to healthcare’s sake, among other reasons. Okay. Thank you so much for taking the time to talk to me! I’m glad that we found a time to connect, bodies.
Mugabi: Yeah, thank you for having me.
Drew: Thank you for listening to episode 78 of No End In Sight! You can find Mugabi on Twitter @mugabsb, and on instagram @mugabs. 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/iTunes. Thanks for listening!