Mugabi Bienkya talks strokes, international healthcare systems, and medical racism.
TranscriptBrianne: I’m Brianne Benness and this is No End In Sight, a podcast about life with chronic illness.
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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.
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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.
Mugabi: Exactly.
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.
Brianne: Yeah.
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.
Brianne: Yeah.
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.
Brianne: Wow.
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.”
Brianne: Right.
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.”
Brianne: Yeah.
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: Exactly.
Brianne: Yeah.
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.
Brianne: Right.
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: Exactly.
Brianne: Yeah.
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.
Brianne: Okay.
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.
Brianne: Yeah.
Mugabi: My right side was my dominant side.
Brianne: Yeah.
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.
Brianne: Yeah.
Mugabi: Which like, taught me from a very early age. That religion is a giant scam, you know?
Brianne: Yeah.
Mugabi: A lot of it.
Brianne: Yeah.
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…
Brianne: Right.
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.
Brianne: Yeah.
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.
Brianne: Yeah.
Mugabi: And I’m grateful to now be an adult and to be able to say, “No.”
Brianne: Right.
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?”
Brianne: Right.
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.
Brianne: Right.
Mugabi: Which angers me a lot.
Brianne: Yeah, absolutely.
Mugabi: No one chooses this.
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