Why'd I take speed for twenty years? (Part 2)

0:00Welcome to Search Engine. I'm PJ Vogt. Each week, we try to answer a question we have about the world. No question too big, no question too small. Last week, I asked, why did I take speed for 20 years? This week, part two. We're going to tweak our question a little bit, since it's not about me, and since our guest uses different language to describe these compounds. Part two, our question goes, why did it take Bianca so long to find prescription stimulants? That's after some ads.

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1:40So last week we shared an episode where I was asking a question I had about my own life. Why did I take all these drugs, Adderall, Vyvanse, Concerta, Ritalin, for 20 years of my life? I'd never known the story of how those stimulants were invented and marketed, The story of all the different people who had taken them for different reasons before our modern era, in which now their largest market is kids who struggle in school. When we made the first part of the story, I really only had one listener in mind, a person I knew would never hear it. Myself, in the past. Someone who had a straightforward, mostly unquestioning relationship to stimulants.

2:20A bit of a zealot, honestly. I wanted to make a story that, if I had heard it, might have wobbled me out of my certainty. After we published the story, I got a lot of emails, thoughtful, detailed ones, stories from people who take these drugs but have mixed feelings and questions about them, as well as stories from people who feel like the drugs have just been miraculous for them. I read every email. I always do. Please keep sending them. This week, I have a different story for you about a person with a very different mind and a very different relationship to these compounds. Yeah. Okay. Hey, can you guys hear me?

2:56Hi. Yes, although I just moved the ear pod and now I can't hear as well. Bianca Harris, a trained pulmonary and critical care physician. She was connecting with us from her home studio just north of New York City. The lights are very bright, though. This is not like a stimulant twitch that you see going. It's the lights. That was not where my assumptions were set. But it's okay if they were. Bianca has been on either Ritalin or Concerta for the last 14 years. In Bianca's life, stimulants show up pretty late, but her story begins well before they do, in her childhood, when she's just a very small kid going through an immensely scary and confusing medical experience.

3:43Can you just tell me the story of your brain as you understand it? Sure. Sure. My story is a little bit different, I think, than a lot of people who may be listening to this. I had a brain tumor when I was eight. And it was thought to be a pretty slow growing tumor that I probably had for most of my life. But when I was probably seven and a half, I started having episodic headaches. And funny enough, nobody really took them seriously. And they were very intense but very short-lived. So I would have them and sort of clutch my head and then they would go away and I would be fine and go play. So I don't think I thought that much about it until I remember one day being at our country house and there was, you know, a deer or a family of deer in the backyard and the whole family got up to go to the window to see and I got up and I fell right down.

4:44And that was very scary to me. And I could not stand without assistance. And I think that night is when I started throwing up. And at that point, my father was a physician and my mother was a nurse at the time. They were clearly fearful, but they had very different approaches to listening to me in the three months leading up to it. My dad very much did not want to see it. And my mom did. And actually, at some point later, she told me that was the beginning of the end of their marriage. So no pressure. Because of the way they reacted to what was happening to you? Yeah. She felt like she knew something was terribly wrong.

5:24And he thought I was crying for attention. Oh, wow. Yeah. Talking to Bianca, it's very clear that as a kid, a fundamental lesson she learned was that it was bad to cry for attention, which gets at something really complicated about people. When someone's in pain or they're sick, we can have two responses towards them. One is sympathy. We might offer them compassion. The other, though, is we might just feel annoyed. This pain the person is complaining about. Is it real? How real is it? And Bianca, as a kid, decided very young, maybe without even realizing it, she didn't want anyone asking those skeptical questions about her.

6:03So she didn't complain. She doesn't complain. When she does describe a painful experience, she's careful to contextualize it, to hedge, to acknowledge that it only lasted for a little while, or that she knows how lucky she is in other ways. I'm saying this now because you'll hear it in this story, and because in some ways, this is a story about pain that gets acknowledged and pain that doesn't. Bianca remembers that it was months of headaches before her father took her in for a brain scan. But when he did, they quickly found the tumor. The surgeon, Fred Epstein, came down, and I did see Fred speaking to my father, looking at the films, and I saw his head kind of drop.

6:44My mom had been with me, and then they switched. And my dad is the one who said, you're going to have to have a little operation, you know, to take something out of your brain. And I can only imagine what kind of guilt he probably held for not having recognized it sooner. Because at that point, it was a pretty dangerous situation. I see. And did you understand when he said you're going to have to have a little operation, but that involved your brain? Like, did you, what was your reaction to that emotionally? At the time, my dad was a physician and I really prided myself on being the perfect patient.

7:24And so it was scary, but without understanding the implications of what was happening, I had the opportunity to perform and be really good and make him proud at the hospital where he worked. I remember swinging my legs while I was sitting on the gurney. And in fact, we went to pick up my sister afterwards. And I remember running up to her and saying, I have to have an operation. Like excited. Yeah, like excited. Bianca remembers the day of the surgery. She remembers that the girl in the bed next to her had a brain tumor as well. She remembers the anesthesia mask being placed over her face, and she remembers being afraid they would start the surgery before she was actually asleep.

8:07While she slept, the surgeon removed a golf ball-sized tumor from her cerebellum. When she woke up, her favorite unicorn puppet was at her foot, and she felt comforted by that. So what was the point, like, at some point, presumably they send you home, you recover, Like at some point, it's like, this is fixed. This is over. This is a thing that happened. When does that happen for you? Well, from the beginning, everybody's like, oh, you're better. You know, you're fine. You had this giant Goomba taken out, but no big deal. You're fine. I don't know what they were saying behind my back, but that was pretty much as soon as it was done.

8:45You're good to go. You just need to heal. At the time when they removed part of the skull to get in, they didn't replace the bone. They used a wire mesh. And then the bone sort of grew over it. And so the back of my head was a little bit flat. And I guess before my hair fully grew in, I remember being at school and kids making fun of me, which was not awesome. But it's the only time that that really happened to me. Was there something they would say or they would just be like? I think they called me metalhead at one point. God. which was not so informed. But anyway, you're like, actually, it's a mesh.

9:20Yeah. OK, so like you recover from the surgery, your hair grows back. It feels like a thing that's in your rear view. What's your first perception that like something unusual might be going on for you? I remember picking up the diary of Anne Frank. I had a sister who was three years older and she was reading it. And I think I was probably 10 or 11. And it was very small print, paperback. But I just remember I could not focus on the words. I could only see the sort of spaces between the words come at me. And for the life of me, I just couldn't finish a sentence. And I got very frustrated and I put it down.

10:06And as the reading became heavier in middle school and high school, what it took for me to get through something and really understand critically what was being said. You know, that was a disaster for me. At the time of the surgery, doctors believed removing the tumor would not affect Bianca's cognition. Back then, it was thought that the cerebellum only affected fine motor skills, which meant that when Bianca was a kid and she began to suspect that something was wrong with her mind after the surgery, there was no available research to support her growing suspicions. As she passed through grade school and into high school, she had difficulty concentrating.

10:48She found herself easily distracted. Most of all, she struggled with reading. She was a slow reader and felt very ashamed of it. And it wasn't just that she read slowly. It was that it was hard for her to both hear the words of the book in her head while simultaneously having her own thoughts about those words. In fact, there was one day in class, I think in my sophomore year, we were reading The Bell Jar. And I was asked to read out loud and comment on it. And, you know, there was a metaphor about peeling an onion. And she asked me to explain that. And I couldn't. I think I literally talked about her like making dinner.

11:25And I knew that wasn't right. But I just I couldn't read and think at the same time. And I was anxious, of course. And I remember she really humiliated me. And I know it sounds like I've had some horrible school experiences with that kind of thing. I haven't had that many in terms of being treated inappropriately, but those things do stand out. Grade after grade, Bianca kept slogging through school. It wasn't that teachers or students were constantly making fun of her. It was just that she felt like a phony. On the inside, I had developed a sense of, I guess, self-loathing, for lack of a better word.

12:01Because your identity was that you were a smart person and people thought you were a smart person. And then you were having this experience, which is that reading and reading comprehension felt like they required kind of like squinting mentally in a way that did not comport with your idea of a smart person. Yes, especially because my sister was a heavy reader. My dad was a heavy reader. And I just thought, you know, those two people are really smart. This is not easy for me. And what ended up happening was that my way of dealing with that ended up being some degree of procrastination, both out of fear and because if I could get myself scared enough, then I could focus.

12:43Right. So I would often wait until like one o 'clock in the morning of the day an assignment was due to do the work. Right. Because the adrenaline of the fear gives you like a little boost. Yep. Yeah, it's funny. Like I had a similar, like I didn't have a brain tumor, but I had the feeling of like, it's very confusing to get signals that you might be smart and signals that your brain might not work at the same time. And for me as a kid, it was just sort of like, I would prefer that you guys treat me as dumb rather than you guys sort of treating me as a person who should be capable of doing something that I'm not doing.

13:22I would just prefer you guys left me alone like I think there's a lot of cultural discussion about people trying to figure out whether or not they're thin or people trying to figure out whether or not they're pretty but like if there had been a mirror that you couldn't look in at your brain I think as a kid I would have just stared at my brain all the time because like I couldn't figure it out figuring it out felt important but figuring it out felt painful and the adults in my life were very preoccupied with whether or not I was doing a good job being smart or whether something was wrong. And it's funny hearing you talk about it helps me remember just how painful the confusion was.

14:01Yeah. I mean, I can totally relate to that because every moment alone or in comparison to others, you try to like decide once and for all, am I this or am I that? Yeah. What was the cruelest story you told yourself that explained it at the time. Well, I didn't believe I was smart. At that point, I was sort of almost hardwired to think that everything I had done was out of luck or charm or, you know, all the other things that people with imposter syndrome tend to do, which is denigrate your abilities and merit and basically attribute any of your successes to kind of external factors. Right. So I was a master at that, which also made me feel really bad about myself.

14:46Bianca graduated high school in 1993, about a decade before I did. The wave of stimulant medications that I would boogie board in on had not yet arrived in time to catch her. So she had to get through this without medication. She also had to get through it without a diagnosis. A diagnosis is such a tricky thing because it's both a story about ourselves we can use to understand our own minds, but it can also be a label that limits what we believe we're capable of. These days, my bias is to think more about the downside of a diagnosis. And yet, hearing how much Bianca struggled before she could find a name for what she felt, let alone a prescription to help her, I see how lonely that was.

15:30And at times, how maddening. And Bianca says it only got worse in college, where she'd sit in the back of the class, or skip class, because she was convinced that she was the only person there who felt like an imposter. She felt depressed and anxious and undeserving. Feelings that persisted even in the classes where she was having some success. And so when something would happen, like you would get a good grade, you were just like, you're a phony. This is fake. This isn't real. I would always have like an hour or two of euphoria that maybe I was wrong about myself. But then the crash would be even worse.

16:12And what did I do? I just tried to do harder things. I ended up doing a graduate degree in infectious disease epidemiology in the UK after college. And when I did that overseas, I had such an incredible time and I loved the science, the microbiology and sort of the science behind the public health and medicine. And I was like, you know what, I'm just going to do this. I'm going to go to med school. I've always wanted to go to med school. Now it's not because I want to be a neurosurgeon to sort of redeem myself from my, you know, travesties at eight years old, but it's because I'm really interested in something else, infectious diseases and what have you.

16:51So when I returned to the States to do my post-bac, I actually had a herniated disc in my neck. And as a result of that, because I really couldn't look down at paper for too long, when I took the MCAT, I got extra time. And when I got extra time, I killed it. It's so funny because it's the kind of allowance that by the time 10 years later when I was going through high school, if you just knew to like wave the yellow flag of like, I think I have ADD, they were like, extra time, extra time. But you sort of got there by accident. By accident, yeah. And I did really well in the MCAT and that changed my life.

17:28What do you mean it changed your life? because at that point I think I had measured so much of my intelligence and therefore worth on performance on exams I see um and of course now I lost my train of thought because I did not take Ritalin today when was the first time someone when was the first time you remember hearing about amphetamine well I don't remember paying much attention to it and my psych rotations and things like that, you know, wasn't one of the more important things to learn about. But it came up for me when I was in residency. And then I reconnected with the therapist that I had in medical school, who, by the way, was apparently seeing everybody in my class, but nobody knew about it.

18:16I mean, the anxiety and the stress and all of that is exceptional in medical school. And so I was telling him more about the things that were troubling me. Yeah. And that's when he brought up the possibility of a stimulant. And what did you think? I think I took a minute and I wasn't sure because I didn't want to take anything. I just like sat on it. And then I was really struggling one day and I was just sort of like, fuck it. Let's try it. Bianca was a fellow in medical school. She was 34 years old. Her therapist gave her a survey to test for adult ADHD. This was a test Bianca took with complete confidence and passed with flying colors.

18:58And with this ADHD diagnosis, she got access to a stimulant medication, Ritalin. For her, this compound was a revelation. If you're someone who struggles to concentrate, taking one of these drugs for the first time, you can feel like someone has just pulled a clump of cobwebs out of your brain. It was remarkable because I never realized that there was a sort of a physical feeling behind my eyes that when I did take the stimulant, changed. So, you know, there's this sort of stereotypical way of speaking about it as, you know, the shade's going up or putting your glasses on. But I felt it behind my eyes in a way that I don't feel with coffee.

19:46What do you mean? So, like, when you say behind your eyes, You mean like the fog in the front of your brain behind your eyes? Yeah, it's almost like it's boggy back there. And it gets sort of cleared and dried out. And then I can think more clearly. But there's a real noticeable difference in how I sort of physically feel in my head. That's not a very eloquent way to state it. But it is different from something like caffeine. Yeah. I remember. Yeah, it's like sharp and it's bright. Coffee feels like, the image in my head of coffee is like when you're in like a music studio and there's a board with all the levels on it, the sliders they slide up, and coffee feels like you take all the sliders and you slide them up a little bit.

20:35And for me, what amphetamine felt like when it was good was like three or four of the sliders that I really needed got pushed all the way to the front. Yeah, I like that. But I didn't feel high, though. I just felt right. And so what was the primary feeling when you had that experience from that chemical? Like the emotional feeling of it. Not the chemical feeling of it. I mean, it was love. It was like, I can't believe I've been putting myself through this. Like my brain actually does work, you know, and maybe I've been replicating this kind of neurochemical activity with fear my whole life. And I chose critical care because that keeps me, you know, on the edge of my seat.

21:28And that really works for me. But it was such a relief. Did you feel upset that it had taken this long to find something that helped you? Devastated. Yeah. First there was the relief and the love. And then there's sort of like, oh, but why couldn't this have happened sooner? And because I had really tried to get people to listen to me. Even in my program, I had tried a few years earlier. I went to my program director and said, listen, I'm having a really hard time keeping up with these articles. You know, I have this history. I've always wanted to get neuropsych testing. I don't really know how to go about it.

22:08and he said he would get back to me. He seemed really interested and he never did. And I was too shy and scared to go there. I thought maybe I'm the mistake. Maybe I'm the one who got into this amazing program that shouldn't have. Right, right, right. And so if you ask more questions, you might get an answer that you don't like. Yeah, leave well enough alone. I've been dealing with this. Like who cares if my health is deteriorating, which it really did later. So I do think they're related, but yeah. Sometime after Bianca finally started taking stimulants, she got a full neuropsychological exam, similar to the one I had as a kid.

22:51For Bianca, it was two days of intense tests measuring how her brain processes information. It gave her a clearer picture for the first time of her own mind, this part of her that had confused and bothered her for so long. and it confirmed her suspicion that something was unusual there. The disparity between my IQ and my reading was shocking. And I remember calling my therapist after and being both relieved and really, really upset. Just, you know, he's like, look, you've had the added overlay of confusion because you are smart. and yet there's this other thing that you've led yourself to believe to the contrary, but we have objective evidence now that you're really fucking smart.

23:41Yeah. How old were you when you got the neuropsych testing? 34. Oh, wow. Yep. And if you want to know how crazy some of these numbers can be and you can still be successful, my IQ was in the high 90s in terms of percentile, and my reading rate for comprehension was in the second. Wow. Yes. Wow. So that means that 98 % of the population can read faster than I do for comprehension. You must have worked so hard. Yeah. I can't imagine what it would be like to have had that information withheld from me until I was 34. Yeah. I mean, in hindsight, it feels like torture. I'll be honest with you. I mean, I've had a great life and opportunity, but when I think about the number it did on my self-confidence, yeah, it does make me sad.

24:39Nobody wants to hear you complain about stuff like that when you're in the honor society or whatever. Like, it just, it doesn't make sense to other people. It doesn't make sense to you. And you can really, like, twist a narrative around it that's wrong, but it's all you can do to make sense of a confusing situation. That neuropsych report that Bianca received, at this point, it was more than a decade ago. And the science trying to understand what is happening in brains like hers has actually inched forward since then. Just last month, Bianca got in touch with a group of neuroscientists who study the cerebellum and who are now looking into adding Bianca as a case study.

25:18We spoke to one of those neuroscientists, Dr. Anila DeMello, and she helped me see something that Bianca had been trying to articulate. When you meet Bianca in person, she looks, and this is a word I've come to understand to be extremely loaded, but she looks very normal. She looks like a doctor who lives in a nice house with a nice husband and a cute son in the suburbs north of New York, which is true. But what you can't see, you can't see evidence of her childhood tumor. You also can't see evidence of her adulthood bout with breast cancer. You can't see that a year after her child was born, she had to have surgery again.

25:54And throughout most of her struggles, her continuing preoccupation has been the problem of her own mind. Fogginess, headaches, and inability to focus without the help of stimulant medication. Pretty much everything Bianca has grappled with is in some way invisible. And so, not always believed or taken seriously. Women are less likely to be diagnosed with ADHD. doctors are less likely to detect it, even apparently in a case like Bianca's, where her medical history is anything but normal. This neuroscientist, though, Dr. DeMello, actually looked at a scan of Bianca's brain and saw something closer to what Bianca sees.

26:36Dr. DeMello said what she sees is a large, lateralized lesion on one side of the cerebellum, or, as Bianca's apt to put it, a giant hole in her brain. Everyone's always known that the hole was there, but for years, no one knew what it meant. Dr. DeMello said in the history of medicine, the cerebellum has been woefully understudied. Remember, for years, scientists thought it only controlled fine motor functions. But now, we know there's a connection between the cerebellum and cognition. And we know that an impact to the cerebellum can also affect cognitive functioning, which can inform symptoms that we now associate with disorders like ADHD.

27:16It'll take years to really figure out those connections, but it's exciting research. Dr. DeMello says people like Bianca, people with highly unusual brains, are going to be part of how we begin to fit the pieces of the puzzle together. After a short break, Bianca talks about some of the downsides for her of the stimulant medications she feels so grateful for. And she turns the tables on her interviewer.