Taryn Gilligan talks traumatic brain injuries, lyme disease, allergies, PTSD, and finding a lump in your breast.
I’m Brianne Benness and this is No End In Sight, a podcast about life with chronic illness.
First off, here’s a quick reminder that I have a patreon campaign, which is a really simple way for listeners to support the show financially on a monthly basis. So if you’ve been enjoying the show and you also have a couple bucks to spare, I’d be so so grateful if you’d sign up as a patron at patreon.com/noendinsight.
This week I’m talking to Taryn Gilligan about a whole lot of things, but particularly about traumatic brain injuries, lyme disease, allergies, PTSD, and finding a lump in your breast.
I also have a couple content notes before we get to the interview. First off, this interview basically begins with a head injury. This story definitely sent me into presyncope, and so if you are an extremely squeamish person (we know who we are), then I’d recommend jumping forward almost a full nine minutes after Taryn says “women’s soccer is brutal.” I’m going to give a super-simple takeaway for squeamish folks like me: Taryn got a major concussion playing soccer and had difficulty forming new memories, and then had a second soccer head injury right at the end of the nine minutes you’re skipping.
If you’re mildly squeamish, then I’d just get ready to hit the skip button a few times beginning at that same point.
Taryn also talks about her experience with an eating disorder. This story is a little bit harder to extricate, but if it’s something that you’d like to skip then you should be able to do that by jumping forward a minute or two when she mentions it while she’s in college. This part of the story does not have as much detail as the head injury.
Before we start, here’s my 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: I like to start by asking people, how was your health as a kid?
Taryn: I, in retrospect, having gone through all that I’ve gone through, I am very grateful to say that I feel like for the most part, I had quite an idyllic childhood, especially with my health. Also I was just a healthy hardy kid. I played a lot of sport and I was out and about constantly, just very active. My whole family has a bunch of environmental and seasonal allergies, so that’s definitely something that I dealt with, but typically for only like one or two weeks in May or something like that.
Brianne: Like pollen season.
Taryn: Exactly. The other thing that I dealt with, it was just kind of a quirky thing that happened is I would get strep upwards to seven times a year. Any type of cold that took too long would just turn into strep or like anything, just like turn into strep.
Brianne: And did you take a lot of antibiotics for that?
Taryn: Whatever the bubble gum medicine was, I figured it was amoxicillin or something like that I constantly took. My parents used to joke that anytime we’d go over a major hill or anything like that in the car my ears would pop and I’d get an ear infection. So those were the two things that were quirky about me, but I didn’t feel like it was. When I think back to my childhood, they weren’t things that totally took up a ton of my time, I don’t know, I didn’t really think about them too much. When I was 14 or 15, I got my tonsils removed, but that was more so because it got in the way of some hobbies that I had, and I was like, I’m so sick and tired of this, let’s just take them out. I was like, you know what, like I’m kind of just over it. So we ended up getting them out and that made a huge difference. Which is great. But other than that, no. I mean, childhood-wise, especially before I became a preteen, I feel like overall, it was a pretty great experience. Thank goodness they had those memories to look back on now.
Brianne: It sounds like things started to change, so what was that like?
Taryn: Yeah, so middle school again, I was pretty normal. The only thing is, uh, am I allowed to talk about my menstrual cycle? Okay, cool. I got my period very early, for my friend group and stuff like that. I was 10. I had just turned 10, and that was fine, but it wasn’t until I hit around maybe 13 that it started getting very heavy and I was having cramps that were so painful that I would get sick or I just couldn’t get out of bed. I also would gain and lose like 15 pounds every two weeks and I had like three different pairs of pants.
Taryn: Yeah, exactly. Kind of like after ovulation and your little phase, I would just whoop like all the way up and I had two pairs of pants over that. Being in middle school, was a tough thing because as much as I feel like other people probably didn’t notice, I certainly noticed. And also with getting your period early, I was already basically what I look like now when I was 13 years old.
Brianne: Yeah me too actually
Taryn: So I was also a giant, I feel like in comparison, cause I grew so quickly. And I think that was tricky for me, but I went the OB GYN with my mom because I had too many absences because of it. And they’re like, “Oh, you know, you’re pretty young, but it kinda sounds like PMDD”. So at the time they were like, we’re going to put you on Yaz, which I don’t think is around anymore. I think there’s a lot of issues with gas.
Brianne: I definitely just remember they were in every magazine for a while. They had a really aggressive advertising campaign
Taryn: For sure. I think the reason they did that is because at the time it was one of the only birth controls that had diuretic properties in it. So it kind of helped level out all the water retention that I would gain every two weeks, which was really nice. And so I ended up being on that, and then it turned into Beyaz because again, I think that there was some legal issues with like blood clots or something like that. They had to change it. But I was on that for about eight years, and during that time, I feel like I was pretty solid with my symptoms.
Brianne: So it helps with pain, pain and weight regulation were the big things, right?
Taryn: For sure. And I was at my cycle like every first of the month. It was super easy. Luckily, I mean, one good thing about my cycle, regardless of being on birth control is it was always consistent and it just was a lot. No, other than that it was pretty much fine. So that wasn’t an issue for me for a while. But then, kind of going chronologically, I got into high school and an important thing to know is, like I said, I was very active and into sports all my life. I played soccer like ever since I could walk. I played premiere. I play like, local town levels and for school and everything like that. And I played a year-round traveling around. And, it was just like a huge part of my identity. And it’s what I love to do. And so I was on my high school soccer team and I was a goalie. It’s funny cause I had written about this prior and I think it was September 21st, 2007, it was an early game in the season and we were away. And what’s tricky about this is I don’t remember about two years of my life.
Brianne: So it’s all heresay?
Taryn: Yeah, it’s like, I’m like an unreliable narrator technically in my own story, but these are all, they feel like my memories, which is such a weird thing to say. They’re so vivid, but I think that’s because I’ve adopted them as my own. I think bits and pieces, I do actually have some memories, but most of it I think is emotion. I remember the emotion of a moment and then create kind more of the visuals and the experience in my mind, if that makes any sense?
Brianne: Yeah, it totally does. Cause memory’s unreliable anyway, which I know isn’t the same, but like it’s that but more.
Taryn: So where I go from here in terms of from this moment in September, 2007 up until probably like the end of my sophomore year of high school. These aren’t technically really, my memories this is just kind of sharing like what, I don’t know, the stories of my life, I guess.
Brianne: So what happened to the best of your knowledge?
Taryn: Yeah, exactly. So with that being said, we were at an away game. I was in goal. Apparently a girl kicked the ball to another girl, she kicked it. It didn’t go as far into the boxes that she expected it to and so I go down to pick it up. I kind of like, with both hands on the ball, pushing it towards my chest. I’m kind of like hunched down on the ground a little bit. This girl sees that it’s in my hands. Female soccer. I feel like we always assume that mens sport, are more aggressive, but like women’s soccer is brutal, like super brutal and so she sees it in my hand. She knows that I have it already. She goes, and she slide tackles me, but her cleat catches my left temple.
Brianne: This is 100% where I get a little bit squeamish. So I want you to say it all, and if you just notice me, be like, that’s me managing my own absurd squeamishness
Taryn: For sure, like, no worries. so she apparently hits my left temple. I will also note that a detail that was given to me is that it was found that she was wearing metal cleats. So like the spikes, you’re not allowed to do that in high school soccer,
Brianne: You’re supposed to be wearing, I don’t know if they’re rubber or plastic kind of stuff.
Taryn: Yeah, whatever that is, definitely not metal. And so a metal cleat, at my temple. And it ended up shifting my front plate. So when you think of your skull, like your forehead, to the right, like in couple millimeters. And then I ended up swaying, I guess backwards from the force of it and falling back on the back of my skull. And apparently you could hear it from the sidelines. Like how, like hard I hit the ground. And, apparently I kind of just lied there for maybe like 30 seconds. And I think people were starting to move towards me. Cause they were like, “Oh”. But then I popped up, I was like, “Oh”.
Brianne: Everythings fine over here.
Taryn: And, when I did fall down, it will note this week so I’ll probably forget. The impact of it – so it shifted my front plate when she initially hit me, and when I hit the ground, it caved in the back of my skull a little bit.
Taryn: So this whole thing, like there was a major impact to my, like, head. And, so I pop up and I’m like, okay. And I apparently looked as if I was heavily inebriated, swaying from side to side, like, walking off the field. And they, surprisingly had a trainer, because most of the time, like, high school games did not. But they came to like kind of do the cognitive basic tests that I guess you do for like concussions and stuff like that. And he’s like waving his hands in front of my face and he’s like, who are you? Do you know what day it is? Do you know what happened to you? And I just, I didn’t know anything. I didn’t know anyone around me. Like I just felt like….and I remember, well, I don’t remember it, but like I remember hearing that I was like kind of panicked about it cause I was just like, everything is wrong and I don’t know who I am and what’s going on. So he’s like, it sounds like she has a concussion for sure. You should take – my mom was luckily there – he’s like, you should take her to the hospital, um, to get assessed, just to make sure she’s alright. Uh, I guess on the car ride home, I’d called my boyfriend at the time and explained what was going on, and then I got off the call. My mom’s like, what did he have to say? And I didn’t know who she was talking about. I didn’t know that I had been on the phone. It was just..
Brianne: Like, what had happened.
Taryn: Yeah. So I was able to like converse, but like nothing that was coming in with sticking at all. And it was just, I apparently just kept asking her what was going on and like, just the same questions over and over and over again.
Brianne: I 100% have to change position.
Taryn: No, you’re good.
Brianne: Just because of my own squeamishness, so I’m going to do that.
Taryn: That’s okay.
Brianne: Hang on a sec.
Taryn: No, you’re good.
Taryn: I know.
Taryn: No, you’re good.
Brianne: The one other episode that I’ve had trouble with is actually another head injury one.
Taryn: Oh, yeah they’re so rough.
Brianne: Yeah, totally. And I don’t at all mean it, like, I want these stories just as much, but I’m like, Oh, this is my personal, like …
Taryn: That’s my threshold. Yeah.
Brianne: Okay. So you got off the phone and you didn’t know what he had said to you.
Taryn: I didn’t know what he had said. I didn’t even really know who she was talking about. And so she ended up taking me home quickly to kind of put me in the shower, or was it the bath, or something like that because I had grass stains and everything all over me. And put me in my pajamas and rushed me to the hospital. And, apparently when we were there, they did the same cognitive test where they make you balance on one foot or, like ,can your eyes track the finger and stuff like that. And I had passed that, and they’re like, okay, she’s concussed. I dunno, like, maybe she has a hematoma, but like she doesn’t really seem like that because she’s able to pass everything. Like, just have her go home, go to bed, wake her up every couple hours, make sure she doesn’t go comatose.
Brianne: Like standard concussion protocol it sounds like.
Taryn: Right, exactly. Yeah.
Brianne: Did they run any other tests or was it just the, like, verbal?
Taryn: From what I understand, it was just like, can you walk? They had me like, the tile on the floor…they had me like, oh, can you walk in a straight line? And I’m sure it wasn’t great, but probably like..
Brianne: Whatever the threshold was.
Taryn: Yeah, for them to be like, that’s okay. And it really was the cognitive test – because I’ll mention it later – that have screwed me so much, I guess, because like, it’s such a terrible indicator of how well you’re doing at any given time, because they told me, they told my mom that basically give it a week. She can go to school, but no contact sports, but in a week have go to her primary care. And they’ll do the same cognitive tests over again, and if she passes that she can go back to sports and living her normal life.
Brianne: Everything the same Also as a contextual note here that I, from my own experience…I fell off my bike while I was in high school and I had a minor concussion. I was wearing a helmet, I hit my head and I lost my memory at the time and went to ER, but like, I lost my memory for maybe two hours.
Taryn: Ooh, yeah.
Brianne: It came back that day. And so, just like perhaps that’s what they were expecting and if the screening tests, or whatever was going on, can’t tell the difference between that and what your experience was, that’s a significant issue.
Taryn: Yeah. So I woke up the next day and apparently I was, like, relatively fine. I didn’t really know too much of what had happened, but I definitely felt bumped and bruised and uncomfortable. I remember having my mom, well, again, like I don’t remember, but like I had migraines quite a bit that entire week. I was very light sensitive and noise sensitive. And she took me back a week later and she did the cognitive test and I passed, like, super easy.
Brianne: But you still couldn’t remember.
Taryn: Right. And my, so I was making memories…So after that, it was just the day that I didn’t remember at the time, apparently. And then I was able to create memories and “keep them”, which…now I don’t have them, but like at the time I was able to recall. And even though my mom mentioned like, “Oh, she still has a migraine”, she’s like, that’s alright, that’ll subside over time. So I went back to soccer. They didn’t let me in goal because they figured that’s too much potential contact, but they had me in defence instead. And my mom wasn’t there for this, so she doesn’t really have as many details, but from what my friends had told me, and teammates at the time, it was like the second quarter of the game again, and a ball was coming. The goalie must’ve punted it across the field and it was coming overhead. And headers are a big thing in soccer. And so I went to go head the ball, and apparently there’s a girl behind me, and she climbed my shoulders, like, pushing her hands on my shoulders. And she went to head the ball at the same time. …I’m so sorry for you!
Brianne: I’m fine. I’m fine! It’s so not about me, but..
Taryn: And she slams her like her forehead into the back of my head where…
Brianne: Which was already seriously injured..
Taryn: Right, which had gotten crushed in, like, a week before. And so I basically just flat out, like, dead weight on the ground. And that was kind of it. And I don’t really remember what they did. I obviously must’ve gotten up. I must’ve gotten off the field, but I don’t remember. I don’t, no one knows. And that was just kind of it.
Brianne: Did they take you to the hospital this time?
Taryn: I don’t think so, because my mom doesn’t remember doing that. But it was after that…That’s when apparently I made memories, but for sure, everything was like pretty much gone. And that’s when things got way, way worse for me. I’d also always been like an A or B student. I loved learning and school was very easy for me. After that, my grades were a mess. Math particularly for some reason, in class, I’d be like, “Okay, I got this, like, A plus B = C. Got it”. And then all of a sudden I just couldn’t do it. It would go in and then that was it, and I just couldn’t retain it. And so I couldn’t pass a math test to save my life. And it was frustrating for teachers because they’d be like, I just saw you do it correctly. Why can you not do it on a test? And I’m like, I literally don’t know.
Brianne: Like nothing is sticking.
Taryn: Nothing is sticking somehow. So I was also, during this time…So I didn’t have, up until maybe a year or a year and a half ago, the language for what I was experiencing. I always used to call it like, “I’m having that feeling”, but I didn’t know how else to say it. And my family just knew over time. But, I had obviously the blinding migraines that were terrible, but what was even worse is what now, I’m just gonna call it what it is, which is, I dissociated. I was in almost a constant state of dissociation, or I went in and out of it, basically like every other hour. And it felt like, honestly, like every single day, that I was dying. I just thought that I was going to die all the time. Like, for someone who hasn’t dissociated, it’s so difficult to try to explain what it feels like, but the only way that I would ever tell people is like, I’m not necessarily a religious person by any means, and I don’t really know what exactly I believe, but it’s like…If your soul, if you will, is being ripped from your body. And it’s not like I could see myself…I didn’t have that type of description, but it just felt like I was like…That’s always what I imagined death to feel like. Like your soul is leaving your body. And like, that’s exactly what it felt like, just the essence of who I was as a person …It was just being ripped from my physical body. And I just never knew if I was…I guess it always scared me because I never knew if I would ever go back to, like, if it would ever just feel normal. So even though sometimes it would be just a minute or two that it would happen, it would feel like an eternity. But what I’ve learned recently is one of the reasons I think that I don’t remember outside of just the amnesia from the concussions is that I think that I actually did dissociate for a huge portion of that time. And in hindsight, I’ve learned that dissociation, it’s like one of the most unique and beautiful things that your body does, it’s like a protection mechanism. It’s almost like your body pulling a ripcord when things are too crazy or too much. It’s just trying to protect itself. It’s like, “Okay, we’re taking ourselves out of this situation…Like, sorry!”
Brianne: Yeah, it’s a lot on your body right now, so we’re going to just try to put a barrier. Yeah.
Taryn: Exactly. But like, of course I didn’t know that at the time. And so every single day I remember I was often triggered by the hallways at school in between classes with all the people moving around and the lights and the noise. I would feel like there’s all these people around me, but I’m like, I feel like I’m dying. I literally feel like I could die right now. And having to keep that in and to feel normal, or to try to pretend to feel normal in front of all these people so they don’t Just to act normally. Right, exactly. Like it, it was, it was so much at the time. And, I just didn’t, I think, because it was so hard to explain how I was feeling a lot of the time with all my different symptoms that I would tell, especially the people close to me, like my family and some of my friends, but I kept…Now it’s hard because I realized, so many years later, that I didn’t tell people. I just kept it all in. Which is, I feel like so bad for my past self that she felt like she had to to do that. Because also, at the time, I lost a ton of friends, like over that two year period because they thought that I was faking it, that I was looking for attention. They just didn’t understand what I was going through was so weird. The person they knew, it was like, basically like was fundamentally gone. Like, she just wasn’t there anymore. I was kind of like a zombie and like a shell of the person I was before. So I was very isolated and, it was probably two months in – where I was struggling in school, I was in so much pain from constant migraines, I was dissociating all the time – that my parents took me to see a sports medicine doctor who specializes in concussions. I think he himself was an orthopedist, but he somehow like also specialized in, I dunno, in concussions and at the time…They have what’s now called impact testing. I think that it’s an acronym. I don’t know what it stands for, but I think kids now, who play sports, I believe, in most states have to like have preliminary impact testing done.
Brianne: Like, as soon as something this happens?
Taryn: Or no, before. So, when you enter in school sports, I believe, I could be wrong, that you have to take preliminary testing so that they have a baseline on you. Like, do you have an injury? They’re able to kind of figure out where in your brain…
Brianne: Like, what’s changed.
Taryn: Right, exactly. So, they had just started it. So there was no baseline for me. They just basically, like, where I was at the time. So I took the test and they’re like, “Oh, okay. That’s pretty bad. Pretty bad. Okay. Alright.” And so I had to take that every single time I saw them, but they had me see a neuropsychologist, a neuro ophthalmologist. I was in physical therapy, which was a little bit unique because it was working on mostly like balance and stuff like that.
Brianne: Was that stuff also impaired, like your movement and stuff?
Brianne: At that time.
Taryn: Oh, so I couldn’t stand on one foot for anything. I would often bump into corners at school by accident or like when you’re walking with somebody down a sidewalk, I’d almost always walk into you at some point or another. I think I did a pretty good job of keeping it together for the most part, but I definitely struggled in terms of my balance, especially.
Brianne: Like you were probably coping or finding work arounds, but when it was actually tested, it was like…
Taryn: Yeah, for sure. Yeah, I remember my mom told me they had me do the Wii video games a lot because they had a lot of balance, things like that, and she’s like, “You just couldn’t even do it at all.” And I was like, “Awesome.” Yeah, so essentially with all the testing they had done, they’re like, “Yeah, you have a lot of issues. You’re cognitively… your eyes, your balance, all these different things.” And I had a 504 in school, which is kind of like a disability type document to give you accommodations or what have you.
Brianne: Do you know if it’s similar to an individual education plan?
Taryn: Maybe, perhaps. Yeah, for me, it basically was my doctors telling my teachers and principals that these are my limitations, this is what she’s going through, and these are our recommendations of how to help her during this time. And I remember it was everything from being able to record my classes, which my teachers refused to do, so I could hear it and help myself remember or play it back so I could retain those memories. I’m trying to think what else. They had me do extra time on tests. I know that they asked the math teachers to allow me to have the formulas, not the answers, but just formulas for things because if I had the formula, I could do everything on my own for the most part.
Brianne: Like you just couldn’t retain what the steps were almost, but if you knew what the steps were, you could execute them.
Taryn: Right. So they wouldn’t let me do that either. A lot of the things I was supposed to have, they just wouldn’t give to me. But basically I think the things that they would do is if I was having a migraine or dissociating in class, I could go to the nurse. I had to go to school for half days for six months. I had a tutor that came to my house to basically teach me the stuff that I was missing. And yeah, reading and writin, luckily for the most part, I had no problem with. Math classes that weren’t based in any type of math were fine, but math, I just, nope that was it for me. Like once that happened, it’s never come back at all for me. Which luckily in my line of work now is fine, but unfortunately, the way that the education system works, it’s just kind of…
Brianne: It’s not optional all the way through high school at least, and I think in a lot of college programs too you at least have to do something.
Taryn: So high school was pretty rough. Yeah, it wasn’t a positive experience. About a year in to the post concussive syndrome, that I was actually diagnosed with from this specialist, once he saw me because at that point it had been two months and he was like, “Yeah, it’s considered post concussive syndrome at this point.” And they did all the testing. They did everything and they were just like, “I don’t really know.” And at a year, they were just like, “We don’t… science… we don’t know enough right now to help you.”
Brianne: Yeah. To tell you if this… what might improve or when.
Taryn: Yeah. They’re like, “We know that sometimes this can be permanent for people. And we hope that it’s not in your case, but it kind of seems like it might be.” I also remember that same appointment, they told me that I would never be able to play soccer again or any contact sports because the risk of brain damage or dying was too great.
Brianne: If any of your injuries are exacerbated or whatever.
Taryn: Yeah, exactly. And I remember that’s a moment where I feel emotionally I have a memory, but I don’t remember it clearly, but that was so painful to… oh, it’s so weird, 12 years later, but to hear that I couldn’t do something that I loved so much ever again was so, so tough. So, I had to figure out who I was going to be now that I had to… my life was just different now. So I feel like… I hate it. I really wish that after all these years, it wasn’t hard to talk about it.
Brianne: I think it’s so normal for those feelings to still be real. They’re valid and they’re… It’s like grief and loss all mixed up in there.
Taryn: Exactly. And I think that’s been the hardest part in all of this over the years. Grief already is complicated. There’s never a right or wrong way to grieve someone else that you care about, but no one tells you… like there’s no information about how you’re supposed to grieve yourself, you know? And so I think that’s been one of the hardest things over the years. I feel like in that day, during my concussion, I feel like it’s almost like I died that day. And it’s not like the person I was is gone. It’s almost like the ghost of her is still around, and that’s comforting, but also it’s hard to have that part of myself still linger, but this new person was reborn out of so much trauma and fear and pain and suffering, and trying to learn to love that person has been hard for sure, to say the least. Yeah, I’m sorry.
Brianne: No, no. Please don’t apologize. I like what you’re saying. It’s definitely really resonating with me. I know from totally different circumstance. One of the part that stands out is like, yeah, the, the specter of that person. It’s like there is so much out there – and I think for kind of any health condition – there is so much out there that wants to try to convince us that if we just try hard enough, we can get that person back. And I think for me, like that’s part of what can make it so hard. Like you said, it’s 12 years later and it’s still fresh. And one of the things that keeps it, that does that for me is like, “Oh, but maybe there’s something I haven’t thought of”. Like, just totally burying it and letting it go and being like, that person is definitely gone 100% and I can feel these feelings. Like that’s really hard because there’s a lot out there that wants us to keep that door open.
Taryn: Yeah, absolutely. And I think too, and again, like in retrospect, all these things, and I feel like the past year I’ve learned so much. I think I’m more emotional now. I used to be able to tell this story and not have any fears. And I think that’s because I just suppressed everything so deep down as this like coping mechanism to deal with all the pain associated with it. But this past year it’s had this resurgence and I have so many different answers in such a new spin on it that it’s just come up and I’m just like, it’s in my face now and I can’t not deal with it. So, to go back, yeah after hearing, basically like, “I’m sorry, we don’t really know,” I actually – you had the Twitter post talking about being diagnosed with something like mental health related instead of a physical, whatever. And what they basically told me is they’re like, all we know that might help is if we give you an antidepressant, it might help with your migraines, but it’ll make you probably less sad if nothing else. And my dad was with me at the time and he’s like, you know, do you want to take that? And I was like, no. I was like, do you know ho it’s actually gonna make me feel like day to day? Like, what to expect? And they’re like, we really don’t, to be honest. I was like, why would I ever do that? I was like, if you don’t even know, like, what’s gonna happen to me? Like why would I ever do that? And so they’re like, that’s all we can really do for you though. Like, that’s kind of it. And I was like, okay. So, moving into my sophomore year, I remember geometry being mortifying. It was so embarrassing. Like, you know when, in school, when you get your test back from the teachers and everyone is like, “Oh, what did you get? What did you get?”
Brianne: Yeah, it’s so public.
Taryn: Yeah, and she hands open other people’s papers to them, but she like, folds yours in half and like gives it to you and you’re like…
Brianne: This is more subtle.
Taryn: Okay, cool. And you like look at it and you’re like, “Oh, I failed. Awesome.” So, that was terrible for me. And again, like I just didn’t get the help that I needed and quickly after my sophomore year and getting that kind of final diagnosis of like, “You have this, but we don’t have any more recommendations as to how to help,” my school quickly was like, “Oh, okay. So that means that you don’t need those accommodations anymore.” So my junior year on, I didn’t have any, I don’t believe so at least, I didn’t have any accommodations. It was just me and my new concussed brain, like on to figure out how to finish the rest of my high school career. So I, ambitious, took on a bunch of AP courses or like the college level courses too. I just like, I took so many of them cause I was like, you know what, whatever, like I’m going to prove everybody wrong. Like it’s going to be fine. Can’t help math. But like at least I can do like these English, like in humanities type courses. And I worked really, really hard and my grades were never incredible. Like I would get maybe A’s and B’s in English stuff, but like everything else is like, these are definitely lower in math. But, uh, never like my ultimate like, GPA coming out of high school definitely was not great. And then, of course, college…SATs come around and I end up taking the SATs. And that was awful.
Brianne: And heavily math based.
Taryn: Heavily math based. Not to mention being there and staring at these tiny paragraphs, the fonts that are just so close together. And I’m like, yep, okay. Alrighty. And I remember looking into potential accommodations for the SAT at the time. They’re like, “Nope, not for you.” And I was like, okay. I took it the first time, my math SAT score it was so low. Whenever I tell my friends or like…That’s possible? I was like, yeah, it is, apparently. I took it twice and it didn’t change and I was like, okay, well I still want to go to college so I’m just going to apply anyway. My guidance counselor at the time was having a baby, so I had another substitute one. I remember her being like, I had these schools, this list of schools that I was applying to. And she’s like, “Are you sure you don’t want to apply to community colleges or other things like that?
Brianne: Like scale back your ambition.
Taryn: Yeah. She’s like, “I just don’t really see you at the schools. I don’t think you know, it’s going to be possible for you.” And I was like, “Okay. Uh, no.” And so I applied and I got denied to like a bunch of schools and there was one school I really wanted to go to and I even went there and I talked to people. And they’re like, “Your story is so inspirational and we totally understand, but unfortunately your math SAT scores are so low that we just can’t. And it’s not because of you. It’s because if we accept you, then we’re setting a precedent for the rest of the incoming students that we’d have to do that same thing, too.” So, no.
Brianne: I just rolled my eyes really hard at that as an explanation.
Taryn: Yeah, so I was like, okay. And I was also told by that same guidance counselor not to mention anywhere in my applications about my traumatic brain injury or any of the adversities that I had faced with it. She’s like, no one will ever accept you if they know that you’re basically like a disabled student.
Brianne: Okay, that’s…interesting.
Taryn: So I didn’t write about it. Yeah. I didn’t write about it in my stuff. And so for all they knew, I just had these incredibly, terribly low SAT scores and some like mediocre GPA. And hear I am, like, let me into your school! So I ended up having to write letters that was like, Hey, sorry, my brain’s broken. Sorry, I didn’t tell you that the first time. I hope you understand. And some schools were like, no. But I did have a couple that were like, Oh, okay. Sorry about that. Uh, alright. I know that I had one school, oh, to this day I’m just like, oof. They accepted me with the condition that I would have to take special courses and I’d have to meet with like…I’m trying to understand because it’s one thing to… I had no problem with the disability label, but they almost like, villainized it in the way that they worded it. Like I wasn’t an actual accepted student. I was a “special circumstance student” that like, otherwise wouldn’t be in there, but because I have my disability, they’re being nice to let me in type thing. And I was like, absolutely not. I don’t want to spend four years of my life feeling , like I have to be grateful because you were nice enough to let a disabled student into your school. It felt as though they were meeting a quota, if that makes sense. And I just, I don’t want to be on that.
Brianne: So, and it wasn’t about reasonable accommodations, it was about making sure that you weren’t abusing the system, almost, it sounds like.
Taryn: Exactly what I was. Yeah. So I was like, okay, no. So I ended up at a different school. I had initially applied for english and broadcast journalism and realized that the school that I got into, that I liked the most, was actually for architecture. I’d always been good with drafting and things like that. And, my whole dad’s side of the family, not my dad, but the rest of his family were architects and things like that. And I was like, you know what? ,aybe I’ll just do that instead. Unfortunately. There’s a lot of math kinda involved.
Brianne: Yeah. That’s what my graduate degree is in. Actually. A lot of math. It’s true.
Taryn: A lot of math. So, I think about it now. So I got in, right? Great. I finished the rest of my senior year. I’m like, I got into a school. I’m actually going to like a real college. That’s very exciting. I graduate high school that summer, it’s probably like a month and a half before my first day of college and I wake up one day and I have pains just all over my body; my ribs, my, just like the little pieces of tissue in your body that you don’t even know exists on a daily basis. Just everything hurt and just getting up out of bed and walking felt impossible. And I had this like low grade fever. And I just was like, what is happening to me? And it just kept going on for like a week. And I just felt weak all the time. I just like was very tired and I was like, I can’t do anything. I went to the doctor and I initially thought it was Lyme disease because I lived in Connecticut at the time, so there’s a bit of Lyme disease.
Brianne: Yeah, that’s what they think everything is when it comes out of nowhere.
Taryn: Yeah ,exactly. And so they’re like, Oh, it’s Lyme disease. And they tested me for it and they even had the prescription for doxy filled. and I get a phone call literally on my way home from a doctor’s office, and she’s like, Oh, it came back negative. And so she’s like, don’t take the doxy. And I was like, okay.
Brianne: So what’s going on?
Taryn: Right. So she didn’t really know. She’s like, give it another week and if you’re still dealing with symptoms, come back. I was, I also ballooned up like 10 pounds of water retention and I was getting rashes on my, like, legs and feet, and, they just were like, I don’t really know. I also was like, getting the sweats constantly and not just like when you get a fever, you get the sweats. I mean, I would be drenched through my jeans like that amount of sweat and they were like, we really just don’t know what it is.
Brianne: Yeah. Yeah. Luckily my mom and I are like pretty intense when it comes to finding answers about things. And so I saw different specialists and I saw like an endocrinologist I saw, I’m trying to think what else, like an infectious disease doctor. I saw all different types of doctors. I was misdiagnosed with Hashimoto’s disease, MS, PCOS. Really? Like all of these people are like, this must be what it is. And then testing would be, well, okay, so PCOS testing isn’t actually totally required if you meet other criteria. Yeah, MS would be like an MRI or a spinal tap. And then what else did you say?
Brianne: Right. So that would be your thyroid levels, right?
Brianne: Yeah. And so how, how are all of those tests coming back? Or was everything kind of all over the place?
Taryn: No. So they would tell me that I had them and then they would test me and they’re like, Oh, well, they’re like, sometimes that test comes back like a false negative.
Brianne: Like your blood, your blood results are negative, but you still have this disease for some reason.
Taryn: Yeah. They were like convinnced I had these things and I was like. I don’t think so though. And so everything just came back negative and I was like, I don’t know what to do. And no one really knew. Yeah. And they’re like, okay, I don’t know. And I was like, Oh, okay, awesome. So at that point I was like, I don’t know who else to see, to be honest. Like, I don’t really know.
Taryn: What other doctors would be able to tell me about how I’m feeling.
Taryn: So my mom’s like, how about we try seeing a naturopath? And I was like, okay, and so she’s like, I’m convinced that it is actually Lyme disease.
Taryn: I’m like, I’m sure it is Lyme disease. And she’s like, unfortunately, she was explaining that like the tests for Lyme are so archaic, and they don’t have like the most up to date strains of Lyme. So they’re testing for things from like 20 years ago that don’t even really exist anymore I also wasn’t tested for any of the co-infections as well, which are common with Lyme disease. And she’s like, I wouldn’t be surprised if you had at least one or two of the co-infections, as well.
Brianne: Sweating is like a high, one of the ones for Babesia, et cetera, et cetera. Yeah,
Taryn: Exactly. And so she’s like, I can’t prescribe anything cause I’m a naturopath. But she’s like, there is this like underworld of doctors who, cause like in Connecticut there’s like such controversy over Lyme disease. And I prescribing medication for it if you don’t have like an actual diagnosis that shows up on the standard blood tests. So I had like the Elisa and Western Blot once already, and then I got another workup. I guess there’s like extra stuff that you can add on if you pay for it out of pocket.
Taryn: I don’t really understand this stuff, but.
Brianne: Part of it, a very small part as a brief interlude, is that the typical tests are done by Lab Corp or Quest and one of the differences is that the Western Blot looks at the antibodies to individual proteins on the bacteria and so some of those proteins are Lyme specific and some of them aren’t. And so that’s why there’s like weird combinations in the test results that are very confusing. Then, there was briefly a Lyme vaccine, so everybody who had had this vaccine would show antibodies to a few Lyme specific proteins. So some of the bands on the Western blot were excluded from labCorps and Quest because of this vaccine, cause you would get false positives with anyone who had had it. But then the vaccine was taken off the market very quickly. I think it was only available for like two years or something because a lot of adverse reactions had been reported, which may or may not have been valid, but that doesn’t matter. but for some reason they never put those bands back into the testing, even though most people haven’t had the vaccine. So private testing, which is like Igenix is the U.S. company that does this. Yeah, that’s probably the one. And so the biggest difference is that they’re looking for, I think it’s two there are two Lyme specific bands that you can test for that LabCorp and quest don’t test for because of this vaccine thing that is irrelevant to most of the population now. Anyway, that was just like a background piece for anybody listening that I now know about. So, so you had a new test done by a naturopath?
Taryn: So I ended up, she gave me this like underworld of these Lyme doctors that could help me with this and so I found one in new Haven area and the thing is, once you get to that point where these doctors aren’t in network anymore, or like they’re doing things that they’re not supposed to, which I don’t know how I feel about any of this now, like what I think about it, but I had to pay all this out of pocket, so it was incredibly expensive. Oh yeah, it was, it was quite a bit of money to get the testing, to do the treatments and everything else. This doctor also had had Lyme disease herself, like chronic Lyme. So she was a big advocate of stuff like this, and it happened to her. So I know it’s like bounces back and forth. but, I did start school. So she had told about these doctors and trying to get an appointment was difficult. So in the meantime, I started school. And it was very difficult because I was still in so much pain. I was still so tired. I was still so sweaty. And architecture school is, as you know, grueling. It is very difficult and you spend so much time like in studio and staying up late, working on your models and your projects and things like that.
Brianne: Yeah. It’s a really mean culture. Like it’s very hazing based culture from the very beginning.
Taryn: Yeah. It was so brutal. Uh, and to, to not be feeling well and to try to do that was not easy for sure. And I’m also somebody who like, if I’m not going to do things well. I think my younger self, specifically, gets very like petty about things and I’m just like, you know what? Like maybe I don’t want to do it anyway and so that didn’t help things either. But, in my first semester was seeing this doctor on and off. I ended up the testing came back negative for Lyme. but positive for Babesia and then. I’m going to call it by. It’s like common term, but like, it’s like Myco something, but it’s like walking pneumonia, I guess. There’s like one of the other subsets and there are just these little critters just like around, and so they’re like, I know that you’ve got a negative on this test as well for Lyme, but we’re still really convinced that you actually have Lyme disease somewhere in there, as well. And so they ended up putting me on six months of Doxycycline and also metpron, which is an anti-malarial medication, which is liquid. It looks like literally like a neon yellow. It’s disgusting and the had gotten those two, the Metron was for the Babesia and, obviously the Doxy is for Lyme disease. And it was an experience, for sure. To say the least. I know that you’ve had like other Lyme patients on here. So, I’m sure you’ve heard, like, them talking about like their die off experiences and things like that. Oh yeah, I didn’t know about that ahead of time,
Brianne: So, you weren’t warned?
Taryn: So I would feel my normal like low self and all my symptoms, and then I start to have more energy and things would feel great. And I’d be like, Oh my gosh, I’m almost starting to feel normal again, whatever that means, and then all of a sudden I’d be like, Oh, this is worse than it was before. I was like, Oh my gosh., I like literally can’t even like move my fingers. It was so painful. I don’t even know how to describe it. It was just like everything in my body just felt like it wasn’t working. Unfortunately, at the end of the six months, they tested me again for things and it really wasn’t working. All that had really come from that six months is that I had really messed up my stomach lining with the metpron
Brianne: From all of the drugs? Yeah.
Taryn: Yeah. I was in the hospital twice for stomach bleeding. I was just puking blood all the time. It was very painful and they’re like, yeah, it’s definitely from your antibiotics. Well, not just your antibiotics. With that, with the anti-malarial medication, are like just a whole thing. So, I was still sitting there in class and trying to learn and sweating through my jeans. And that was so embarrassing. Cause you’re like, at that time I didn’t have a diagnosis really, or like one that we really knew for sure. So I was like, I don’t want to just say like, I have Lyme disease because that’s something that people understand. But like, if I don’t have it, I don’t want to be like, framed as lying. So I was here just like literally sweating so hard in class and I’m just like, how do I explain this to anyone? Like I just don’t know. And also like, you couldn’t miss your classes because, I think things have changed now, from what I understand in school. Where they’re, for the most part, more lenient about absences, but in my experiences, you have three at the most that you can take. And then like, it starts to become a real problem. Even three, like you’re like really discouraged from like taking.
Brianne: Yeah and that’s definitely still a huge problem cause people that I’ve spoken to, and I see this on Twitter all the time of like. I’m disabled. I’ve asked for accommodations. It’s very hard to get them. The biggest one that I need is, and you were talking about this with high school too, like it would be great to be able to record things because I just can’t go to class. And for some reason, like so many professors are just not interested in accommodating that and like finding other ways to make sure that students get the information. But yeah, it’s a huge problem.
Taryn: Yeah. So I was going to class probably when I shouldn’t for sure, but like how I was feeling most of the time and trying so hard to finish my homework and finish my projects. And again, with architecture, it’s very hands on, so you have to do so much to get there. Oh, I didn’t even mention this. Oh my God. I’m just like, I have so many things. I always joke that I’m a medical Murphy’s Law. But also, after the concussion, about that summer afterwards, I ended up with several food allergies, so that made nuts, like peanuts, tree nuts, soy, and then it ended up being more later, but that was already difficult to begin with. But that doesn’t seem like much now when I think about the rest of the stuff that’s gone on. But between the Lyme disease going on and also having my food allergies, they ended up moving me into older, like junior/senior housing because in the freshman housing, they didn’t have any kitchen stuff, it was just the rooms that you live in, basically, which was difficult for me. So they ended up putting me in upperclassmen housing so I could have access to food and things like that, which also helped me just in general feel a little bit better and be able to feel like I was putting actual nutrients into my body. But during that time as well, so between the concussion, between the food allergies, between this probably Lyme disease, we don’t quite know yet, and other co-infections, I think that it had gotten to me mentally and I think it snuck up on me, that and the pressure of school and everything and wanting to do well, especially because I felt like I wasn’t supposed to be there in the first place, given how hard it was to get in. And unfortunately I… I think January going into the second semester, I had… it took me awhile… Well, I think in hindsight compared to like other people, it probably wasn’t, but I had developed an eating disorder, and I started to really restrict my food like quite a bit, and I also exercised pretty incessantly, like the time that I did have, but I wasn’t in classes. And now I know that it’s because I felt like I had no control over my body, and that was the one thing that I could, but at the time I didn’t really know that. And so I was thinking I was just getting fit and getting really healthy. And at that time I’d also started a blog where I documented my journey through being really sick to ultimately finding hopefully my ultimate health and happiness is kind of my tagline. And little did I know, I was in the midst of an eating disorder, and I was just punishing myself for things that were way bigger than me and I had absolutely no control over. So I luckily pretty quickly… I’ve been with my partner for… we’re celebrating 10 years this month, but we were obviously together during that time, and he saw me withering away and just acting like not quite myself. And he recognized these behaviors and helped me see what I wasn’t seeing. And the realization that I had been punishing myself in this way, it’s not a great thing. Self awareness is amazing, but when you’re in such a dark place like that and you don’t see what you’re doing, and then you realize, it’s terrible. It’s one of the worst feelings. I remember before I… because I had decided not to get help from my college mental health center because they were notoriously… how do I word it? They were not helpful and would also… it’s kind of like a black mark on your record. That’s what I would hear from everyone that if you go and you do anything with your mental health with them, everyone’s going to know about it, everyone’s going to assume that you’re unwell and that you can’t be trusted and that you shouldn’t be there, and all that comes with the stigma of any mental health issues.
Brianne: Like you get flagged as a problem.
Taryn: Right. Exactly. And so I didn’t want that. And I remember having to call my parents and let them know that I had an eating disorder, and that was one of the most difficult conversations that I had, and saying like, “It’s okay. I’m going to try my best to slowly incorporate food back in, but when I get home this summer, I really just want to see a therapist and work through this really, really hard. So let me finish this semester. I’m going to do my best. Obviously my partner’s here, he’s going to watch over me and obviously if anything gets worse, we will figure it out and I’m willing to come home if I need to, but I really want to work it out.” In the interim, I ended up getting another test for Lyme. I wish I had the name of it, but essentially what he ended up doing, the same doctor that had tested me before, is instead of the ELISA Western Blot, this is more so taking your blood, and specifically your white blood cells, and introducing them to the lyme disease protein, I think, and seeing how many rush to it. I think the idea is if your body has an immediate response to it, the assumption is that like there’s…
Brianne: Like do you know how to mount a defense.
Taryn: Right, exactly. And apparently there was an overwhelming response. My body was just like, yup, for sure. And so they were able to confirm that I did have Lyme disease, and that I did have Babesia, and I did have the walking pneumonia for sure. And so they put me on… there’s a protocol… I wish I had that… again, this is so long ago now, but there’s a protocol where you cycle three antibiotics. Have you heard about this? Okay, three antibiotics because Lyme goes through, the way I describe it is a squiggly line and then a squiggly line with a shell, and then it turns into almost like a circle where it has armor around itself. If you want to say that better, feel free.
Brianne: That one I know is definitely called the cystic phase because the idea is it’s a spirochete, so it’s always a squiggly line and it can go into survival mode, this is not more technical, which is the cystic phase. The other thing is the biofilm.
Taryn: Oh, okay.
Brianne: Yeah, I think. Those are definitely the three states that I have heard about or have heard require different kinds of attention, and it’s a survival mechanism at the bacterial level.
Taryn: Right, yeah. So I was taking one of the mycins, whether it be Erythro or Azithro, I always forget, and then I was taking Ceftin and I was taking Tinidazole, which most people when they hear that… when doctors… because I have to give what I’ve taken in the past, are like, “What is that?” And I’m like, “I know. I don’t even really know what it is. I think it’s technically an antibiotic, but it acts a little differently.” But, essentially I had to start with the Azithro first, took that for like two weeks or so, and then I added Ceftin, and each time you bumped it up, it sucks. I’ll be honest, even worse than just the Doxycycline, because essentially it’s killing off, again sorry this is not science, but the squiggly line gets killed off with the azithro right. But then Lyme’s like, “Oh my gosh, we can’t have that happen.” So it builds that shell around itself and it’s like, “We got to protect ourselves.” And so Ceftin kills that one. And then the thought process is that helps kill off the majority of them in your body. And so then another month or so, or six weeks later maybe, they added in the Tinidazole, which was supposed to kill the cystic… you know, when it turns into basically just a circle. And I took two days of that, and I broke out into all body hives, and I ended up having to go to the ER and they’re like, “Oh, oh.” I took Benadryl on my way there because I obviously, with the food allergies, I have a pharmacy in my purse. And I was like, “I’m not going to go into anaphylaxis over this, I swear.” I ended up taking Benadryl and I still had them. And they’re like… because they also didn’t really know… and I was up in Boston at this point, so like there’s amazing hospitals everywhere and they’re like, “Is this an allergic reaction to the medicine, perhaps? Is this also potentially a reaction to how much die off you have in your body also maybe? Yeah, okay, but you shouldn’t be taking this medication just in case it’s either of those things and…”
Brianne: Something’s not working.
Taryn: Yeah, so I remember calling my doctor’s emergency hotline, and I was like, “Help me, please.” And he’s like, “I’m sorry. Stop taking them immediately. And give your body maybe two or three days off and then just start them again slowly and see how you go.” So I know that this sounds short, but all of this spans over maybe about two years time from when I had gotten diagnosed with Lyme disease to me finishing with the three medication. So it took me probably like six to eight months to even get a pseudo diagnosis and then actually be on medication to then actually getting an actual diagnosis and taking the protocol that you’re supposed to at the time and me actually stopping the medication. So I decided that I felt better. I gave myself a week, and I felt so much better off of it, which makes sense.
Brianne: Like right after this reaction you mean?
Taryn: Yeah, once I like stopped taking the pills, I was like, “Oh my gosh, I feel so much better.” I actually had energy again, I didn’t have any body aches, I wasn’t sweating. And I was like, “I’m just gonna give it a little bit more time and I’m going to see how it goes.” Because at that point, I’d been on medication for probably on and off for about a year and nothing had really come from it or nothing that they could measure really of improvement. So I just kept… more time had gone by and I was like, “I just don’t want to take it. I don’t want to go back on it.” And part of me feels like that was a not great decision, but at the same time, I haven’t had those symptoms really necessarily since. However, I will say, do I think that I still have Lyme disease? I don’t know. All I know is that when I decide to become a mom one day, if I decided to do that, I will be considered a higher risk pregnancy because it’s apparently now congenital.
Brianne: Right. Which is also, you mentioned very briefly, you alluded to the controversy in Connecticut, which has become controversy everywhere, and this is one of those things that I think is caught up in the crosshairs of it all, but is very important and scary, and worth thinking about.
Taryn: Yeah. And it’s so hard because I feel like the reason I’m so torn about this entire Lyme disease experience is because I almost feel like, yes, I needed treatment for sure. I should have gotten the two weeks Doxycycline when they first thought that that was going on because so much time had gone by and it had so much time to just populate in my body and make it a home. I also have no cartilage in either of my knees. I have no idea where else it’s living. It’s been said that it’s probably in my neurological system. It’s hard to say, but I felt, like I said, I felt so much better once I wasn’t taking it. And I feel like the medication, in a lot of ways, almost did more harm to my body than good. And I don’t… it’s hard because I don’t blame the doctors. It’s, again like one of these things, they just didn’t really know at the time, but for me to be puking blood, for me to be just constantly herxing for months and months and months and months and months at a time and not getting any relief or feeling any differently, I just… The way that I think I rationalized in my head to stop is like, this hasn’t worked and if it was going to work, it would’ve worked by now. And again, I’m not a doctor, who am I to say? And you know, maybe I’ll regret it later, but at the same time, nothing was coming from it. And even the doctor said, “Yeah, you should be improving by now.” And I just wasn’t.
Brianne: Yeah. Even on the medication, even with this probable explanation of why the medication makes everyone feel so much worse, you’re supposed to come out of that trough.
Taryn: Yeah. And, I just wasn’t.
Brianne: And you’re describing, well there’s more to it than that, but you’re describing a big part of the heart of the Lyme controversy. Some doctors who are just like, this is ruining people’s lives, like the symptoms, so what you’re talking about of the pain and the sweating and the everything and the neurological problems, like people’s lives are being ruined and there are people who want treatment no matter how difficult it is for the chance of a better quality of life. And then on the other side there are people, well, there are people who are like, there’s no like possible chronic manifestation manifestation of Lyme, but the CDC does recognize post-treatment Lyme disease. Whatever, this is a whole big, bigger thing, but a big part of that side is just like giving people this many antibiotics this intensely comes with it’s own risks. And so yeah, there are a lot of doctors who are just like, until this is better studied, that just shouldn’t be happening. The risks are too high.
Taryn: Yeah. And what I will say too is I was taking heavy doses of probiotics too, and my stomach was still having terrible issues as well. Post treatment or active treatment, I did see my naturopath again and she gave me some like herbs to take, but I took them pretty religiously. I just didn’t feel like they were doing anything, like I didn’t even get any herxing, no nothing. It just felt like I was just paying money, like a lot of money, for really nothing. And that’s kind of also the issue. Like I said, a lot of this was out of pocket and part to me feels like, again, like she literally had a list of like these doctors on a sheet that aren’t recognize otherwise. And a lot of them are like pediatricians, a lot of them are not related to like Lyme disease themselves. And so, it’s important. This needs to be studied. This is a big issue. It’s an epidemic happening, for sure. I believe people, I believe their symptoms, I believe are stories. But at the same time, I think that people take advantage of patients. And I think that there are people that are just out there to make money, and I feel in a lot of ways, like that happened to me. And I think that’s another reason why I was just like, “I’m done. I don’t want to do this anymore.” Because I just feel like I’m being taken advantage of and I’m not given the care that I really should be at this point. So that’s kind of why I stopped. But yeah, it’s… I always feel backwards, like when I tell people that I stopped and I don’t want you to feel like you have to make that decision or that I’m villainizing doctors because there’s so many incredible doctors out there. But also, I know so many friends that I have now who are in the wellness space that still have chronic Lyme that will do infrared or ozone and all these things. And I’m like, “I don’t have the money to do that.” You know, I do well for myself, but those things are so expensive and you have to be on them continuously in order to really see results, and it’s just not practical for most people. And especially American insurances aren’t going to cover things like that. So, it’s already a privilege to have healthcare and to be able to afford extra testing, but for things like that it’s pretty impossible for most people, even for myself. So I think at this point in my life, I don’t know if I still have it, but luckily it’s not such a… I don’t know, it doesn’t impede my life in such a negative way that it once did. I’m still tired. Like I said, my joints are still a mess and I feel like when I’m stressed, a month or two later I’ll get flare ups and rashes, and I’m like, “Is that you? Is that you, Lyme disease? I don’t know.” So, it’s hard to say. And from what I’ve also been told by doctors, they wouldn’t even be able to necessarily tell one way or the other because once you test positive, you always have the antibodies that are going to show on the test. So it’s hard for them to discern what’s an active infection and what’s a potentially dormant infection that’s just like chilling, you know.
Brianne: Or like a kicked infection. It’s like once you’ve had Epstein-Barr, you will always test positive for Epstein-Barr because there’s… I mean there’s different… IgG, whatever, all those things, but there’s always evidence that you’ve had an infection.
Taryn: Exactly. I don’t think that I have Babesia anymore because those symptoms were obvious, like the sweating and all of that was absolutely Babesia. So, I feel like thank goodness that was kicked. The walking pneumonia is something that has still shown up when I get blood tests for different things, and they’re like, “Oh, but that could just be from anything.” And I was like, “No, but I had that before.” And they’re like, “I don’t know.” So, but I guess that’s something that people do get here and there, from what I understand. I guess it’s not necessarily just tickborne. Fatigue is still an issue, but that comes from a lot of the things that I had, like the traumatic brain injury. You know, that’s still a big issue.
Brianne: Right. It’s hard to say what the lingering effects are just from that.
Taryn: Yeah. And them compounding on top of each other, it’s just tough to ever discern what is what. And also the one thing that’s unfortunate about Lyme is if you have any weaknesses in your body, it goes and lives there. It’s like, “Oh, okay, your brain is having a problem, we’re going to make sure to go there specifically.” Perfect. I love it. Surprisingly enough though, I didn’t feel like my migraines or any symptoms like that seemed to flare that much, during that time, which is nice. But now that there’s years distance, I’m like, “Oh, I think that there is some interaction that has happened.”
Brianne: And it’s hard to tell.
Taryn: Yeah, it is. It’s so hard to tell. But yeah, so I ended up finishing my freshman year of college. Like I said, I had that eating disorder. I went home. I talked to my naturopath at the time as well. Oh wait. I had a PCP, the one that initially was like, “Oh, we think you have Lyme,” told me not to take the Doxycycline. I went to see her for a physical, and I was telling… she asked me how my health was, and I was explaining the situation, and she straight up told me that I was crazy and that I was… Oh, sorry, that I…
Brianne: In that context, I don’t know the right answer conversationally because when it’s mixed in with gaslighting, I do think that the impression that we get from doctors is that they think that we’re crazy in the derogative way, frankly.
Taryn: Yeah, exactly. Exactly.
Brianne: It’s complicated word wise.
Taryn: It is. Yeah. She told me that I was looking for attention, that I was making it up, and she was yelling at me and yeah she was absolutely yelling at me. I admitted to having an eating disorder because she’s like, “It seems like you’ve lost a little bit of weight.” And I was like, “But I’m working on it,” and she’s like, “Eating disorders are for selfish people that just are like narcissist and you need to go ahead and you need to take antidepressants and you need to go volunteer or do some charity work because you’re too self absorbed.” And I was like… and my partner was there in the room, and he was just like…
Brianne: Holy shit.
Taryn: … in shock, like absolutely in shock. Like, what did I just witness right now? And I remember like being like… like I knew that’s obviously not what I was gonna do, but I was like, “Oh, okay. What do I even say to that?” But that is an attitude that I’ve gotten from a couple of doctors for sure about things. Anyways, so yeah, I go home. I basically had my naturopath, I saw a dietician, and I had a psychologist that I was working with as a team. And I was like, “Look, I’m totally open to whatever needs to happen. I understand…” And the way that I describe it to people too, who might not have familiarity with eating disorders, whether it be personally or anyone that they know, the best way I can describe it is that there is you, and then there’s your eating disorder thought, and it’s sometimes very difficult to separate them. But it’s not like a separate, not like a different personality or anything like that, it’s just like… I don’t know how to describe it. It’s just like a negative presence that makes you believe things that aren’t true and has you act in ways that you otherwise wouldn’t. And so already being like, “Okay, I know that I have this fear,” and having to separate myself from that and be super cognizant of every single thought that’s coming through my head was difficult, but I was like, “I don’t care. Like whatever we need to do, we need to do.” With the exercise bulimia, it was a little bit difficult because I wanted to still be active, but figuring out the best way to allow myself to still exercise without obviously going overboard and doing it for the wrong reasons was difficult. So for the first few months, I was increasing my calories ever so slowly, which was hard mentally and emotionally, but also physically. And then we ended up with exercise just taking it out entirely for a little bit. And I went to therapy three times a week for the entire summer, and I was just solely focused that entire summer on getting well. And I felt like I was very lucky in the sense that over the course of those several months that where I was at the start to where it was at the end, it’s almost as if it was a blip in the matrix and it’s something that actually hadn’t happened, if that makes sense. I was back to my normal, I guess, I hate using that word, but like homeostasis, mental place. And it was so weird to think that I had had those thoughts and those were behaviors that I was doing. It’s such a strange thing to look back on now, but that was something that I had to work through. And I think that maybe it was easier because I recognized very quickly why I was doing it, and I was like, “Oh, as much as you know… I have lost control of my thoughts. I know why, and let’s reverse engineer and get back to the heart of it and figure it out.” So it wasn’t easy. I’m going to brush over it because it’s like… it’s a symptom to a lot of the things that I was dealing with and it’s important, but because it was such a small amount of time, just for the sake of time, I’m going to keep going.
Brianne: Yeah. But I do have one question. Just because you mentioned also you had developed all these allergies earlier and so I would imagine food had become fraught already and I know in general, with chronic illness, because people will recommend dietary interventions, this is absolutely true for Lyme, dietary interventions and figuring out how to exercise around your illness can, like all of these things can already play such a big cognitive role around rule-making and if I can just do this, I’ll get better. I mean on the one side, there’s also a word for some of that, which is orthorexia. But these things are really complicated, and when you mentioned blogging about it specifically as part of it and kind of looking to start a wellness blog, was there untangling that needed to happen around that stuff too?
Taryn: Yeah. So initially when I started my blog, before I had the eating disorder, it was like pretty much right before, but it was the intention. So the whole reason I actually started was just to document my experience through this ministry illness into recovery because I didn’t see anybody else going through what I was going through online. I felt incredibly isolated and lonely, and it was so hard to explain to my classmates. I felt like I never really actually built real friendships in college because I was just miserable all the time. And they were like, “Why is she so introverted?” And whatever. I’m like, “I don’t know how to describe any of this, and I feel uncomfortable all the time.” So online gave me a voice, like an online platform just to express myself, and it ultimately led me to people who maybe had not gone through exactly what I had gone through, but knew of people or had had other chronic illnesses or things as well that could sympathize with what I was going through, so I felt less alone. And then when I was going through the eating disorder, I also talked about that pretty extensively, and I found other people that were recovering as well. And like you said, that can be really tricky because especially when it comes to eating disorders, I feel like there’s a difficult balance of how can we support each other, but also not feed each other’s eating disorders at the same time. And I found that there were times where I had to block certain people or mute certain people because they, it’s not their fault, I don’t look at it like that, but they weren’t triggering me, but I felt like my content, how they chose to perceive it was adding to their eating disorder. And I was like, I can’t have…
Brianne: This conversation isn’t a healthy one for either of us right now.
Taryn: Right, exactly. Exactly. So, it was a blessing and it was also kind of hard to navigate at times. In terms of getting into the fitness space, it’s really interesting because over the course of time, more and more people actually found me in the fitness industry, like fitness professionals would find me, like personal trainers, people that lifted and did bodybuilding and stuff like that, and they’re like, “Oh my gosh, you should do fitness competitions, and you should check out lifting and stuff like that.” And so I actually started lifting and in a way I feel like that was a big part of my recovery because it helped me see my body and all that it could do during a time where I felt like I was just kind of a prisoner in my own body, I guess, for a lack of better term. And so to see that I could deadlift 300 pounds or squat 300 pounds, I was like, “Oh my gosh, I’m so strong. That’s so cool. No matter how sick I am right now, I’m able to do these things, and that’s amazing.” But yeah, people in the fitness space found me and I felt like when I was kind of coming out of my eating disorder, I never really knew how to feel about it because I felt better. But doing fitness competitions, because it’s so restrictive, luckily, it’s not something that triggered me back into an eating disorder. But I would say for anybody, I would never suggest that.
Brianne: It’s not a good recommendation because it’s not universally safe.
Taryn: No, absolutely not. No, no, no. I always count my lucky stars when it comes to how I handled my eating disorder and how my recovery was for me. And I say that… I wouldn’t say I’m recovered… well it feels like I am, but I think with eating disorders you always just keep it in check. Like if you’re in recovery or remission for… it’s the same thing with… not the same thing, but like alcoholism where you might be totally fine for years and years and years, but you’re still technically that. It’s never… I haven’t ever since then… it’s never… I’ve never even had like one eating disorder thought since then, which I feel lucky. But when I go through like extreme amounts of stress, I’m always so scared that something’s going to snap in me and it’s gonna come back and be like, “Hello.” But I haven’t, luckily at this point, knock on wood. But yeah, so navigating that with with college was interesting, and this community grew and grew and grew. And people were in it for different reasons whether it be because they had had Lyme disease or chronic illnesses or they’re from the fitness community and they just thought it was inspirational to see somebody go through chronic conditions into health and fitness or what have you. And I think that it just… now I have such a different perspective on it, but at the time, that was from 2011 all the way up until 2016 early ’17 that I blogged and did YouTube and everything. I did talks and everything so consistently, and my story was such a big part of who I was, but then I was kind of linked in with this identity of being a fitness person, which is never what I wanted to be with my life. I’d always just started it because I wanted to connect with other people maybe or just feel like I had a place to talk about what I was going through, so that’s tricky. But to go back, I ended up transferring schools because architecture is tough, and I realized that I just wasn’t doing well with everything and with how I kind of ended up with the eating disorder. I was like maybe it’s not the best thing for me, so I ended up transferring schools and majors, and I ended up majoring in English, which is something I was always kind of wanted to do anyway. I did pretty well. I feel like the rest of college was relatively a great experience for me.
Brianne: But your body, so since you had gone off the antibiotics and stuff, it sounds like had been doing… like your baseline was just much better, so maybe with flares, but those flares were definitely smaller, shorter, etc.
Taryn: Yeah. I felt like I went through several years that I just didn’t really feel, other than being just tired, but I felt like that had become like my MO at this point in my life, like I’m just a sleepy person, it just kinda is what it is. Again, I would get a migraine here and there, I would dissociate here and there, but yeah. And I would feel… when I got sick, I would get sick, you know like a standard cold in the winter time or something like that. But overall, I felt like, “Oh, okay, this is what it’s like to actually have a college experience and not be taken by physical ailments. That’s great.” And so I ended up graduating… I was in my senior year and I started applying to grad school because I wanted to be a professor so bad. I wanted to teach English, thought I was going to be teaching 18th century Brit lit. And my partner ended up deciding to apply to an MBA program and got a full ride, which is so awesome. But hearing that I was like, “We both can’t be in grad school.” But more so than anything else, I realized that I had to take the GRE, if I was going to apply. And that brought me back to the SAT. And it was so frustrating because I had worked so hard over the years with my academics, and I finally felt because I’m taking these English courses like I am an intelligent person actually and like I love what I’m doing and I so badly loved to learn, which is why I wanted to be a professor and to teach other people things that I’m so passionate about. But. Oh my gosh. I had to take this stupid test. And feel… oh, sorry… But feel so unintelligent and not smart and feel like I’m unworthy all over again. And so I let that dictate my decision. And obviously I… it was easy for me to be like, “Oh, my partner’s going to grad school. We both can’t be at the same time.” And that’s an excuse that I used. But ultimately it’s because I was absolutely terrified of going through that traumatic experience again of feeling like I just wasn’t smart, when I am smart, you know.
Brianne: And it’s completely arbitrary. It’s almost… the GRE is almost exactly the same as the SAT structurally. And it doesn’t matter. It doesn’t matter. It doesn’t mean anything.
Taryn: Yeah. Especially because I was going for English, so math really wouldn’t be a factor in anything that I was doing anyways, especially in grad school. So frustrating. But I could imagine it’d be similar to these other schools that I was applying to English for undergrad where they’re like, “You know, we just can’t accept that to you, cause we’d have to accept everybody with a bad score in math.”
Brianne: We just have these rules about minimum scores and they can’t be broken.
Taryn: Exactly. And so I was like, “Okay, well I guess I’m not going to grad school.” And during that time I realized my school does what’s called Co-op, which is paid internships that are six months long and you work as a full time employee at these places. I ended up working at an architecture firm as a marketing assistant, and I was able to combine my design background in architecture and my writing background in English and found that I was really good at it. And then also obviously I was blogging and doing social media at the time too. And I was like, “Oh my gosh, I’m actually really good at marketing.” And I was able to really help them. And so coming out of it, everyone’s like, “Oh, you should just work for a marketing firm.” And I was like, “I really just don’t want to do that.” But I acquired this big community that I had and they were all asking me like, “Oh, well, can you personal train and just make more content and stuff like that?” And I was like, “If I don’t work for myself or do something kooky like this, when will I?” So it was like, “Okay, I guess I’m just gonna jump right in and try to see how this goes. And once he’s finished, I’ll go back to grad school.” So that’s what I ended up doing is I became a personal trainer. I got certified in everything and did that, but I realized I didn’t ever want to be any of this. I was just doing it to kind of give back to these people that supported me for all this time and it gave me…
Brianne: And it made sense.
Taryn: It did. It did, when I think about it, but at the same time I realized that it was just this big coping mechanism, and I felt like I didn’t have an identity outside of being sick and people like me as this person. It’s like they almost built this personality for me, and at the time it felt good that people liked it and that it gave me a sense of purpose and that I was exceeding at something and I was able to inspire people, but I think that I got so lost in that, and that actually wasn’t who I was as a person. And so yeah, I was incredibly successful and so much good came out of it and it was so cool while it lasted, and it’s something I could’ve done. I could’ve been a big influencer, could have had that whole life, but I just knew in the back of my mind, I don’t want to do this with my life. And you know, I realized that more and more people don’t care about my story so much, they just want to know how I got my body to look this way or whatever. And it just goes against everything, you know. That’s not why I started this to begin with. In 2017, I had been working for myself obviously for a bit at this point, and I just randomly one day started getting anaphylaxis randomly. I would… working from home, I just have my breakfast, lunch, and dinner, and my partner comes home around dinner time and I just would randomly… and again, I eat such an allergen friendly diet. Oh, the other thing that was added, so during the Lyme disease treatment, gluten, absolutely no. My stomach could not handle gluten anymore. Dairy was always finicky, but I could eat dairy. But so at this point in 2017, I was completely nut free, gluten free, soy free, dairy free, a lot of other things free too. I ate just mostly sweet potatoes and protein and vegetables and things like that.
Brianne: So like a mostly paleo diet, basically?
Taryn: Yeah, yeah. So with that, I was like, “What could it even be at this point? What other allergens could possibly be in here? What is happening?” And yeah. I just like… no matter… from when I was going through the allergies, I remember they had me do the elimination diet or whatever. And I was like, “Okay, so let’s just do the elimination diet and see what it is.” And I just couldn’t figure it out, couldn’t figure it out. I was just having it no matter what. And I was like, “Oh my gosh.” And it was terrifying. It was absolutely terrifying because I’m home alone and I think that I never really quite realized just how much… and this is where it starts to crack and it starts to… I think the levy started to break for me is between the concussion, between the Lyme disease, between everything, I had hit my threshold. And I had suppressed it all so deep down just to function on my everyday basis that something that already is so scary to me… because when I found out that I had the nut allergies, it’s scary. Having anaphylaxis is absolutely terrifying, and I was very good about never coming in contact with things, so it was never really an issue. I have my epi pens, but I was very good about it. And to have this when I’m eating safe foods, I think mentally I was just like, “I’m done. And that’s it. I don’t feel safe. I don’t feel safe in my body. I don’t feel safe in my everyday life. I just can’t function. I just can’t do it.” And so I started having panic attacks every single day, all the time. It felt like my tongue was swelling constantly and I was just… I couldn’t even leave my house. I was just a mess. I just felt like all I did when my partner was at home is just cry. I just didn’t know what I was doing. I would just call my mom on the phone and I would just cry. I’m like, “Mom, I don’t know what to do.” And she’s like, “It’s going to be okay.” And so I was like, “I need to see a therapist. You know, I need to see a therapist.” And so I ended up finding one, and it helped quite a bit. I saw her for probably a year and a half. But during that time, unfortunately… I’m happy and appreciative for her, but at the same time… And this happens, I think for a lot of us. I don’t think that we think about how traumatic having chronic conditions or illnesses or what have you, or anything like that is. It’s not only physically traumatizing, but mentally and emotionally. It can be debilitating, especially over time. And for me, she dug and dug and dug and dug and dug and kinda opened it all up, which is amazing because I was like, “Oh my gosh, here’s all this stuff that’s been underneath, you know, forever.”
Brianne: Yeah, it’s all in there.
Taryn: But unfortunately she has no trauma specialization or anything like that. So it’s like she brought it all up and then didn’t know how to help me sift through it.
Brianne: That is not ideal.
Taryn: No. So for the past couple of years, it’s like I have so many revelations and I understand so much now and I have so much more compassion for myself, but at the same time, it’s just absolutely in front of my face. And luckily during that time as well, we did allergy testing and stuff like that. And so it was a black pepper allergy.
Brianne: Oh, yeah. Which, yeah, would be really hard to find because it’s in lots of stuff because we think of it as like salt.
Taryn: Right. So, that’s exactly why I wasn’t able, with my elimination diet, to figure it out because I’m like, “Oh, just salt and pepper on everything.” And yeah, absolutely. And potentially also grapes too, which would be in wine. But I don’t remember ever having an issue after having that. So yeah, with that being said, unfortunately my elimination diet has taken me two years. I’m still doing it. It’s taken me such a long time because as much as she helps me, she got to a point where she’s like… How did she word it to me? She said… she brought up CPTSD, PTSD. I don’t know what my official diagnosis is, if it is CPTSD or PTSD, and I have severe panic disorder, and I have agoraphobia, which feels intermittent for me. It’s like my agoraphobia doesn’t necessarily exist constantly, but it’s something that… I get very agoraphobic when I’m overwhelmed, which is unfortunate. But with that, she explained it to me. She’s like, “It’s one thing with my patients who have irrational fears or they have trauma in their childhood, and we can help them work through it because they’re safe now.” And I always felt really guilty with a diagnosis of any… whether it be CPTSD or PTSD, because I’m like, “People go to war and see so much tragedy and death and pain, and there’s people that get abducted or sex trafficking or all these different things or natural disasters or war zones. And, I’m just sick. You know, I’m just not, well. Why do I…” I felt so guilty with that. And the way she worded it to me, she’s like, “You’re a victim of your own war zone, in your own battleground every single day, 24/7, 365, constantly. You’re constantly in your biggest fear and you’re facing it all the time. And you don’t have a safety because you just live here and it’s a product of your circumstances.” And she’s like,” I’m really sorry.” And because she’s trying to think of what exposure therapy she could do or stuff like that, and she’s like, “I can’t really do that. It just would be kind of unsafe, especially with your food allergies right now. I want to help you work through it, but those are real life threats for you.” And she’s like, “I don’t really know how to help you anymore.” And she’s like, “Obviously we can teach you meditation and breathing exercises and grounding exercises and things like that, but otherwise, I don’t really know what to do.” And so I was like, “Okay, that’s fine. Whatever.” And so she’s also like, “You’ve gotten to a point too where I feel like you’re self aware, you’re doing well enough on your own. Obviously you can always come back anytime, but I feel like you kind of graduated from at least this type of therapy for now.” And I was like, “Okay.” And I did… I feel like I did really well for a while, but it has been incredibly frustrating with the food situation. My partner gets absolutely irritated because I used to be able to go out to restaurants. I feel like soy is the hardest because it’s literally in everything, packaged foods, they always cook with it in restaurants. It’s just impossible. And so I don’t go out to eat in restaurants. I can’t bring my food to most restaurants in the US, at least, because the health code laws and things like that. And so I just kind of eat at home, and I will go with friends and just sit and hang out, but that makes people feel uncomfortable. Yeah, it makes them feel comfortable. And so it’s again, everything has just been pretty isolating. And I used to have this social presence and then during that time I started taking more and more time off of line because I felt like I couldn’t show up. And I’ve always been such a big advocate of transparency and honesty and vulnerability, but I’m like, “How do I even talk about any of this?” You know, I might have mentioned my concussion, I might have mentioned my Lyme disease, but only in framing it in a way that’s like, I’ve overcome these.
Brianne: Yeah, something in the past.
Taryn: Yeah. I’ve dealt with it, but to sit there and be like, “I still have these issues, and they’re still a huge part of me, and I’m not better.” I might feel better now than I did, but I’m not better. How do I… how can I be inspirational to people? Oh, I’m so sorry.
Brianne: No, no, please do not be sorry. There’s a huge pressure put on people. This is one of the things that I get so fired up about. There is a huge pressure put on anyone who’s experienced illness to only tell that story as if it’s in the past. One of the things that makes me really mad is when I read books that are written by people with chronic illness, for people with chronic illness, and they’re framed like, “I figured out how to heal.” They’re self-help guides about healing, and there will be these moments where they’re like, “I’m doing great now. I’m healed.” And then there’ll be little sentences that are like, “Even when I’m in a flare, I still feel better.” And you’re like, “You’re not healed. You’re misrepresenting your entire situation.” And it puts this unreasonable pressure on everybody else to try and do the same. And I think, in this case, it’s coming from the publishers, but everybody is maintaining this whole fucking thing that it’s in the past and it’s just not. And I don’t… my anger is 100% not directed at you.
Taryn: No. I know.
Brianne: But this is the thing that we’re stuck in.
Taryn: Yeah. I felt like I could only be inspirational if I came at it from like I was an underdog or an overcomer and like it’s something that… a mountain I had crossed or something like that. And yeah, here I am. I’m vulnerable again, and I don’t feel safe and my own body. And how do you explain that to people that don’t know? Every single day I’m scared of my body. I don’t know what’s going to happen. And so I kind of was like, of course… I feel like new ageism has kind of emerged and there’s the law of attraction and all this stuff. And I was like, “I don’t know. Maybe that shit will help. I don’t know.” And so I get into it and then I’m like… they’re like, “Like attracts like. And if you have low vibes, you’re going to have low vibes.” And I’m like, “I am full vibe.” I can’t, some days I just can’t. I wanna think I’m so grateful and I am so grateful because I’ve learned so much and I wouldn’t be here if it weren’t for these things. This shit fucking sucks, and it’s hard for me to sit here and be like, “I am this pure light of love.” And, no shit can sucks sometimes, and it’s so hard to feel guilty because I feel sad and then it spirals and then you’re like, “I’m just never gonna be better. Right? Because I can’t be high vibe. I’m just not allowed to.” Because they make you feel like… Oh, what do they say? You basically are responsible for what happens to you. And I’m like, “Oh, okay so…” Or like you in past life, you had… you signed this into… you know what I’m saying?
Taryn: They’re like, “In your past life, you decided this path for yourself.” And I’m like, “Oh, okay.”
Brianne: You chose this, your spirit.
Taryn: You chose this for yourself. And I’m like, “Oh, okay. Great.” And I’m trying to be grateful in my experience and I’m just like, “It’s hard and it hurts so bad.” And I want to be inspirational and I want to be positive, but it’s hard everyday getting… it almost feels like you’re in this rip tide where you’re constantly being pulled under and you can’t breathe and sometimes you’re like, “Okay, I can get out.” But then another wave comes and you’re just like, “I can’t.” It’s so hard.
Brianne: And this community can tell you that it’s your fault.
Taryn: Yeah, exactly. And you know, I was writing captions that… and it’s funny because I felt like my subconscious was… it seemed like I was this wise person. I was slaying these things but really it was my subconscious talking to my conscious self like This is what you need to know This is what you need to do So reading them now I’m like Oh my gosh But then I just wasn’t I literally haven’t posted on YouTube in three years and I haven’t posted on Instagram in a year I never would have thought that if you were to ask me a couple of years ago how things would go I never would have but it got so overwhelming that I felt like I couldn’t show up authentically and I didn’t have the words And unfortunately in March of 2018 too so I had in 2017 the allergies and then I felt like okay we’re in the clear I’m feeling better Therapy was working March of 2018 I am doing a self breast check because my family has history of breast cancer My mom had always instilled that in me since I was a kid And I’m just feeling around and it’s not even in a normal because you know how you do the circular motions or whatever It wasn’t even that I must have just felt it the right way and I feel this lump in my left breast but I’m just like Oh god And my mom’s like don’t worry about it It could be just a cyst It could just be dense breast tissue Let a cycle go by and if we’re still dealing with something whatever Oh important note I got off birth control during after I stopped the Lyme disease medication because I was like I just want to be myself for once I just want nothing to impede I just want to be me So that is important to note And so with that a month goes by and I still had this lump in my breast and so I go and I scheduled an appointment with the OB GYN They’re like Oh you’re so young because I was like 25 And they’re like it’s totally fine You live such a healthy lifestyle It’s probably just a cyst but we’ll have you go in for an ultrasound just to double check And so I go into one of the hospitals and they do the ultrasound and the doctor’s like thinking again like Oh yeah it’s a cyst And then she like gets in there and she’s like I just see her face and I’m like Oh okay She’s like It’s a hypoechoic And I was like please tell me what that means And she’s like it means that the waves can’t pass through easily so it’s a mass And I was like it’s a what And she’s like It’s a mass And I was like Oh Oh And she’s like Yeah She’s like but you know that doesn’t necessarily mean cancer And I was like but it could And she’s like it could if you’re healthy and you’re young And I was like okay okay All right And she’s like yup it’s okay It’s all right Um she like so because of your age and your you know for health um it was about the size of a Chickie for reference And um she’s like we’re gonna do the weight and space Yeah And she’s like every six months for the next two years we’re going to have you come in We’re going to measure it We’re going to speed She’s like put it in the interim every single day Check it Like if it feels different it feels bigger If anything is different like these come in Um she explained that like at any time I could always often for a biopsy but they’re very confident that they should be totally benighted Like no problem I’m used to having conditions and issues that you know I have symptoms clearly Um Debilitating ones if got but they’re not tangible things that I can feel Yeah I felt fine except I had a chick pea size lump that was in my left breast that I could Oh That was always there to remind me that it was a potential ticking time bomb in my breasts Um and you’ve been asked to pay attention to it every day Yup Not I tried to forget until your next appointment It’s like fixate on this every single day I just think about if it’s changing and obsessive about it Yeah So I was like okay And um I at first I was like I can do this like no big deal And then I was like I can’t Oh God it like it just got too much mentally for me And I was like this is very difficult And then sometimes it feels like it was bigger sometimes And then sometimes I’d feel like it shrunk And I called them I was like how am I supposed to know And they’re like I ended up coming into for six months It was October this time last year And um they’re like Oh you really wouldn’t know most likely unless it grew like quite a bit And I was like so why am I checking it every day And they’re like Oh just you know just in case And I was like I don’t think I even mean Um so they measured it again and it had grown and they’re like Oh yeah it grew And I was like okay So this time now it looks like um I’m trying to think is it a cannellini beans Like those like a white creamy ish beans that kind of had like a scoop at the top out a little bit You know it’s like a little curve So instead of being like circular it kind of grew wider and like had a weird like groove at the top And um they’re like but probably still benign You’re healthy you’re young And I was like sitting there just like Oh my God And um they was like okay fine So I’m still checking this like every day and I just feel like I’m losing it Like as the days progress I’m just like not to mention that a year prior My grandmother had been diagnosed with breast cancer and I happened to be home for a doctor’s appointment um and I was coming back and I figured I’d visit her on the way home like on the way back to Boston And I checked in and she’s like Oh hi And literally two minutes later as I’m in there she gets a phone call and I don’t I didn’t think I knew that she was being tested for cancer I knew that she found a lump in her breast but like I didn’t think anything of it And she gets a call when I get in there And it’s her doctor and her doctor she just like the look on her face like just dropped And I’m like Oh my gosh And she’s like can you talk to her And I said okay And she’s like it’s my doctor And I said okay And her doctor was like hi And I was like hi this is her granddaughter And I explained and she’s like Oh okay Um I’m sorry to say this but um your grandmother has breast cancer And I was just like Oh Oh my gosh like in shock And so I’m like immediately my brain goes into like this isn’t me this is for somebody else but like we’re going to get it together I was like okay like I’ve got a note pad and I was like what do I need to know Like what are the next steps A little bot that phone call replayed in my head over and over and over and over again And all I could think about is like getting that phone call myself Oh And like I’ve had so much bad luck with my health that like I’m just like it’s inevitable I feel like you know like just waiting around I’m just going to find out this information one way or another And so I felt like it had changed at some point So it’s we’re past six months We met about it like seven or eight months and I was like Um I called them and I was like I feel like it’s changed And so I’d go in for another ultrasound and they’re like it does look like it’s grown again But they were arguing like Oh maybe that’s the person that had done it at in October had missed you know done the the sizing or what have you They’re like it probably has been grow like just didn’t really make sense and ends up at did grow But I was like I want to buy off the I was like you told me if you have a biopsy I would want a biopsy I can’t do this anymore And they’re like Oh well You know it’s fine though Like it doesn’t really make sense anymore Like for you to do that like you’re totally fine And I was like you don’t even know if it grew or not Like you’re sitting here like arguing with each other I was like I don’t really care I just want to know if it’s benign or not And like I you told me at the first appointment that I could like often for that And so I had to like fight for myself and they convinced me to not do it And then I just kept sitting there like restless every single day and I’m like I I literally can’t do this And so I called and I like talked to the manager and she like understood And they ended up getting the head of the department um to talk to me And I explained it to her and she’s like look I’m pretty sure this is a fibroadenoma just completely benign She’s like but I understand and even mistreated and you need to feel like this is somehow your fault Or like you know that you know opting in for something that you were told you could have is like wrong somehow And she’s like so it’s on me She’s like I am absolutely going to perform this for you She’s like and I understand how like why you’re feeling the way that you are valid Was like again I think it’s benign but I will 100% do it for you And I was like thank you And so I ultimately end up going in in January and I’m not going to go into detail cause it is kind of gruesome but like um just to save everybody that But I also don’t want to say that if anybody ever finds a lump do not be scared of this This is very important You’re completely numb Like you don’t feel it It’s just like the thought of it It’s what’s like squeamish but it’s important So please be of a lump Please get a check if you can like and you know don’t be afraid of the biopsy Like it’s super important Um but we ended up doing the biopsy It’s like a it’s called like a a hollow core needle It’s like very large And there was like three people in the room helping And what they did is they took out she said eight different samples of it and they put in a cliff It’s just basically like a little twisty piece of metal that basically says like Hey we know this is here in case you like ever look at this Then uh you know any type of like x-ray setting ever again Um as though she’s like we’ll let you know like ASAP like you know it’s going to be pretty sore The healing process is gonna be pretty tough Like don’t do anything extreme for like a few days but it should be fine It shouldn’t like bleed out or anything like that So the waiting period I think was the worst Um it’s funny cause like all my life I wanted diagnosis It like diagnoses for things but like the times like I wanted one but I was so terrified like of feeling relieved Like I was so terrified of this one And I was like Oh my gosh it’s so and so I get a phone Oh yeah And so I get a phone call like two days later and it’s like not when she said it was it was earlier I was like hello And I figured like if she’s calling me early it has to be bad news And I was like Oh my God And she’s like I just want to say I hadn’t heard that Like it’s completely fine Like you’re absolutely benign I was right with a fibroadenoma She’s like I’m so sorry for all this that you had to go through this period of time like feeling like you know you maritime cancer She’s like I’m really sorry this happened to you but you’re like not you cancer free like grandma anything Um the worry of out she’s like you got to keep it Uh she’s like keep your lungs um do the obviously if it continues to grow or it gets to be like a nuisance of any like clients she’s like we can always take it out But right now like I think it’s pretty fine She’s like do know though with fibroadenomas that like they it’s common to get more Um and you can also get it in your other breast as well Um she was like and it doesn’t necessarily mean that you’re any higher of a risk of getting breast cancer in the future Um she was like it’s just something that happens sometimes Sometimes just the lumpy bumpy person and like thought can happen And I was like okay But I felt like I had to keep that secret from everybody for so long Cause it’s also it was in my breast and I was like okay I feel like that makes people feel uncomfortable Like already it’s also in that taboo family like menstruation like exactly And that and the fact that um you know I don’t know just like being a fitness person like my body that people looked at it and admired it to talk about something like a part of my body that like they might’ve thought was like hot or whatever like for the my male audience or whatever for them to be like Oh now like I got to feel all bad and weird about it And I was like am I allowed to talk about this And so I actually haven’t Nobody knows like other than like my family and friends like nobody knows cause I was like I don’t know if I can or should talk about it but it like it was a huge thing And again like it really tested me after I’d gone through all of these things where I was like okay that’s fine But it did eat away at me and like I’m feeling much better now mentally about it But now that I have the distance but Ooh it was definitely rough Where I am now currently Is I have felt really frustrated because I have built this career like to bring them up Like I’ve done marketing consulting I’ve worked for myself doing that for a long time I built another business called the Boston creative collective which basically helps artists um get jobs and gives them business education because they could actually monetize their businesses and things like that Um and I’m also an abstract painter Um and that came from when I was In my concussion like the very like early days where they basically like you can’t watch TV you can’t like do anything Like all I was allowed to do was just like basically like sleep and paint And so I never found myself to be artistic and but I was just like I’ll just finger paint and do shit and like that I don’t really care It gives me something to do Um so when I was going through the anxiety in 2017 I felt all of a sudden and I’ll after architecture too Yeah And going through that I was like maybe creativity is just not for me Like maybe like let’s just not do that Um I felt like I left like lost on my creative drive but um I started painting when I was like Uh home alone I was going through anaphylaxis One of the only things that made me feel calm was to just like paint And at that point I’m doing abstract paintings and doing core style um with fluid acrylics was like a very grounding thing for me And so again like never meant the same way The blog was never meant to be like an income Uh like it’s become part of what I do now Um But with that being said like I have all these things I have a cool like career or a career that people deemed cool or like unique I work for myself I make my own hours but I’ve just had this nagging feeling where I’m like I’m not happy I feel very unfulfilled and I don’t know why And I realized that like I’d always just wanted to go back to school And I think that I had pushed it so far down because I didn’t want to take the GRE didn’t want to go through that again And uh I met I was on Twitter and I saw I think a professor that I had had once was like talking back and forth to somebody or he retweeted something that basically was a conversation of like schools aren’t really most of them are a lot of them aren’t requiring the GRE anymore and I was like excuse me wait Yeah And I was like nah So like I go and I like look at some schools and I’m like Oh my gosh you’re actually like not recording or GRE And I was like I can apply to grad school And I was like Oh my gosh So that was last year and I’ve been thinking a lot about it and obviously like with a breast off I was like you know I really I had planned I was like I’m going to spend this whole year like getting everything aligned and like ready to go So this time now where we are like I’ll be able to like get it all out and I’ll be confident in my applications Then obviously dealing with that I was like is this just not my time Maybe like you know and again like going through something like that I’m like can I do that Like have medical issues and like be in grad school right Like can I handle the stress of grad school And like all my other issues that I have And I let that kind of like cloud things And I kind of decided recently I was like no I’m going to do it Like if I’m going to find an excuse to not do it forever And so I decided to actually pull the trigger And so now I’m working on my grad school applications which is amazing Um but as I’ve been applying um There are two schools that still require the GRE And then um I looked online again like to see are there any accommodations Cause last time I checked um there was only stuff for like blindness and like other like more recognized disabilities And this time I sought one for TBI and I was like Oh amazing Well I look and I’m like it look you would literally there’s they make it impossible Like they’re like Oh can we have your entire life story and documentations and receipts for every single bit of it No you can’t You can’t prove like that one small nuance detail from like 12 years ago Yeah Sorry we can’t give you a comedy It’s like they literally wanted a paper trail like exactly like where I am now to where I was and like it had to match up apps really perfect Like it was just so much Um I had an an eye doctor appointment like just for a checkup and I was complaining that like I was having trouble seeing or like it’s always been kind of an issue on and off I don’t really wear glasses And she like did the test and she’s like you’re fine And she saw my chart that as a TBI patient and I’m surprised this hasn’t come up or but she’s like, “I hate to say this, but like, I don’t think it’s your eyes. I think it’s your brain”. And so she’s like, “there’s something called vision therapy”. And she’s like, “I think that could really benefit from it”. And she’s like, “I’m going to email you that information. You should check it out. I’m not sure if it’s covered by insurance, but it’s worth at least seeing.” And so I put it off for awhile because I knew my insurance was probably going to give me issues about it, but I finally was like, “okay, let’s do this.” And also I realized that would be recent information that I could use towards the GRE accommodations potentially. So I ended up getting an appointment, and I ended up going. This is all in the past two weeks. So it’s been so much information and it’s so crazy, the perspective and how much, like 12 years later, I’m learning now. It’s insane. Oh, it’s a lot. So with that being said, I go to vision therapy, or I go to the initial appointments, and they’re doing a lot of the similar stuff that I did, I believe, in my neuro-ophthalmology appointment, which I’m surprised now in hindsight that they didn’t pick up on these things back then, but again, like 10 or 12 years ago, I guess they just didn’t know as much and it just is what it is.
Brianne: Sometimes these standards change so quickly.
Taryn: Yeah, exactly. And so they’re doing all these different tests. They do things from depth perception to color to I don’t even know. They test everything that your eyes can do, and obviously you have no idea how you’re doing, and they refuse to tell me. And I’m like, “I get it. I understand.” And when it comes to my eyes, driving at night is definitely an issue. I still have light sensitivity. Oftentimes I dissociate the most when we’re watching Netflix at night and the lights are kind of off or dim, and then I get up to go to the bathroom and the transition of light and also where I am in a space, where I’m like, “Oh, oh my gosh.” So other than that, I never really thought too much about my vision. It is very frustrating driving on the highway. I get panic attacks while driving, especially on larger highways. But I thought that that had to do with just like maybe I had a moment that I didn’t know that triggered my anxiety and now I just have anxiety every time I drive on the highway. I didn’t know. So with that, I finished the testing and she, the doctor, comes in and she’s like, “We decided to stop it halfway through because we thought that it would be way too much for you to fit everything in. So we’re going to do the peripheral and rest of the testing two weeks from now.” And she asked me again like, “What happened to you when you were 14?” And I told her all this different stuff with my concussion. And she just looks at me, and she’s like… and I start crying when I start talking about the GRE because she’s like, “Where are you at now?” And I’m just like, “I don’t know why I’m so emotional.” And that’s why I… lately I’ve just been… it’s coming up so much and I think because it’s in my face that this is something I want to do so badly and I’m afraid I’m just not going to be able to do it because of something that happened 12 years ago. It’s still haunting me to this day. And, she’s like, “I see you and I believe you.” And she’s like, “Your symptoms are valid. And everything that you’re going through and have gone through, I’m so sorry that happened to you.” And, I’ve never had a doctor say that to me before. And, it’s so comforting to know it’s just… I can’t even describe how it feels to be seen by somebody.
Brianne: It’s unreal, partly because it’s so rare.
Taryn: Exactly. And especially with the vision stuff, a lot of the questions they were asking me, I didn’t know how… I didn’t have, again, I didn’t have the language to describe what I was seeing or how things were different or what I was experiencing, but they got it. Nobody else, obviously, like my friends or family, understood that. They knew what I meant. And they were able to put a diagnosis or understand in a way that helped them. And so she’s like, “Yeah, you have brain damage. When you got your skull crushed in like that, your whole optical nerve and everything in your brain got bumped.” And she was like, “It’s not just a matter of you bumped your brain and just that area is not working.” She’s like, “Basically what happens is these neurons stretch. And they always picture the brain like slapping the inside of your skull. They think that jiggling is what gets everything going. But really what happens, when it moves like that is your neurons stretch. And for most people in lot of situations where it’s minor, they’re able to go back into place, and then you can recover and can get back to your old self there. For other people, it’s such a bad impact that it stretches. And then it tries to find normalcy so badly that it goes to the other… like tries to connect to other neurons that aren’t the right neuron or it’s just not quite right. And so things are just… takes detours or things just get wonky or not right in different ways.” And she’s like, “and that’s the case with vision. Your brain basically rewired itself in the fastest, easiest way possible in order to have a sense of normalcy, but it’s not in the right place. Things are locked in incorrectly, and so you see the world very different than most people.” And she’s like, “And then logistically speaking, your eyes don’t team together.” She’s like… because I think people seeing my eyes would not… I never would notice that. Looking at old videos, I’m like, “What do you mean? Like my eyes are moving together.” It’s very subtle, but even subtleties make such a huge difference. And she’s like, “When it comes to the literally tracking, when it comes to depth perception, everything, your eyes just aren’t doing anything together.” And she’s like, “and it has something to do with your eyes, has everything to do with your brain. On a very like basic level, you have technically what’s called convergence inefficiency, which can give you things like migraines, which can give you things like dissociation, which can give you like a difficult time reading.” I never knew that. I thought that I was just a slow reader after everything was said and done. I didn’t know that apparently the text isn’t supposed to jump out at you or that you’re not supposed to get a white cast over… I didn’t know that. I didn’t know that the reason driving on the highway was so difficult for me is because it’s too much in my peripherals and that my eyes aren’t connecting, so everything seems overwhelming and with all the light and everything moving by, it’s too much information for my brain. The fact that my brain just doesn’t take in visual information correctly and it becomes overwhelming. I had no idea that I spent this much time… and so it wasn’t just math and I spent my entire undergrad reading hundreds upon hundreds of pages a night and finding it so difficult to maintain that. And luckily I learned to speed read, which is how I got through it, but I had no idea. And it’s heartbreaking when I think about how I’ve had to live this way for so long without knowing. And I’m not mad at anybody. I can’t be upset with anybody for not catching it. I can’t. It’s not worth it, but it’s hard. And so I just yesterday, or the two days ago now, I had my last appointment. And what’s the wildest thing to me is the prism stuff. They do the peripheral testing, which was brutal for me. I definitely have an issue with that for sure, just like everything else. But, she brings out these planks that have these, like. I don’t know if they’re meant to like sway, like when you walk on them, if that makes sense. There’s like two like five foot ones that she puts like together and she’s like, okay, take your shoes and socks off. And she’s like, I want you to walk straight like one foot in front of the other all the way to the edge, and then you’re going to pause for a second and then go backwards. And she, then she got a metronome and she’s like, the beat. I want you to hit each foot like down at the beat, how’s that? Can I look down? And she’s like, part of the game. I don’t know. I can’t tell you that. And so I’m like looking down like wobbling, having a very difficult time. Obviously balance is still an issue for me, and I’m like, Oh, she won’t let you fall. You’re good. And so I get to the end and then going backwards is a little bit easier, but I’m still struggling to do that. And then she’s like, okay. And she handed me a pair of glasses and you wear glasses, so you’ll go on and talking about, but people that don’t, it’s hard to explain. The optometrist, they put that thing that has the different lenses and they’re like one or two, three or four or whatever, and you choose which one works for you. You can feel it regardless if it’s the right prescription for you, it’s almost like the corners of your eyes. You feel like it’s like something like tension maybe. You can just feel it with these glasses, I didn’t feel anything like, it almost felt like there were clear lenses. But she’s like, okay, just walk. And I didn’t even think about it. I was like completely unconscious of it. I just walk in a straight line, like head up to the end pause and I go backwards. Then I just like, look. I turned on my like, look at her and I’m like,
Brianne: what just happened?
Taryn: What is that? And she’s like, okay, improvement. I said, yeah. So she gives me another pair of glasses and she’s like, do it again. This time, I put them on and I don’t know how to explain it any other way, but like once I put them on, I didn’t even walk yet. I just felt, and I’ve always wondered, like if for somehow I was to ever be able to go back, would I ever recognize what it felt like to be normal? And to be honest, like I was not, I spend so long now, I’m not sure. but when I put those other pair of glasses on all describe it as, it’s like I feel normal I don’t know how to describe it any other way. I just feel like normal, like and so I walked back and forth like, head up completely fine like able to do it to the beat, like no problem. And I just turned and I look at her and I’m like, what is this? Like what? Like I don’t I don’t understand. And she’s like, these are called prism lenses, and she’s like, what you’re wearing currently. So like what works for you or what’s called bottom down or BD lenses. So if you think of a prism, almost like as a triangle, like a 3D triangle, um, the access the tip, it’s facing up and the base is facing down. So she’s like, the way that I can describe it to you, it’s as if. She’s like, so you basically with your peripheral issues, it’s almost as if you live life wearing blinders and you’re ever so, even though you’re looking straight forward, it’s almost as if you’re looking slightly down, like that’s your vision constantly. Like not to mention like the other issues that you have with your convergence inefficiency and stuff like that and your depth perception. She’s like, but you literally, it’s like as if you’re wearing blinders and you’re looking at, we’re so slightly down and she’s like, that’s why you always feel slightly unstable. That’s why you feel lately like off balance or things feel driving is hard. Going down an escalator is hard. Like all these different things are why you dissociate so easily. just getting up and moving. She’s like, this is exactly why and so she’s like, basically what these classes do is put you in the right position and bounce the light properly and trick your brain to think that you’re seeing things the way that you’re supposed to see them. Yeah. And so basically, I thought I was going to go for vision therapy. So did she, but she said after all the testing was said and done, I don’t have Irlen’s Syndrome, but I have similar symptoms that Irlen’s, so I tried on a bunch of different hard lenses and blue. Is my color. So, basically what they’re giving me is progressive lenses to kind of help my eyes, not any type of correction, but to keep them just working together at a reading level. So, obviously this would be easier, I’d wear them now for reading and screens and then mid-level, cause I’ve always heard like there’s near and farsightedness. I don’t think we ever think of like, mid,so , basically it’s like a farsighted and mid to keep my eyes aligned. And then I had like the blue to help me with like the coloration issues and then I had the prism, so I get those next week. But I’m like, Oh my gosh. And I was like, do I have to wear these forever though? And she’s like, actually, no. She’s like, you should be able to hopefully be done wearing them within like the next year she’s like, I was like looking at her like, what do you mean? And she’s like, think of these as like training wheels. And I was like, okay. That just like, basically your brain’s going to get used to seeing this way and like rewire itself to actually like,
Taryn: Do that like look like the brain is great, like amazing.
Brianne: That’s wild.
Taryn: Yeah. Like it’s going to heal itself and that’s what’s so beautiful about it. And she’s like, you know, if we decide that it’s not quite working or we want more to like bump things up, we could obviously do vision therapy. But she’s like, I really think that like, this is just going to be enough for you. And she’s like I really hope so, and I’m excited for you. And I was just like the fact that 12-13 years later and I’m just sitting here and I’m like, Oh my gosh. Like it’s something I don’t know
Brianne: that can help something tangible
Taryn: Something tangible that could potentially help me feel somewhat normal again. Like it’s,
Brianne: It’s wild
Taryn: It’s overwhelming. Yeah. Well. That’s kind of where I’m at now.
Brianne: Amazing. Thank you. I don’t think I have any big questions, just cause I know I’ve been asking them along the way and we’ve covered so, so much.
Taryn: It’s a long story.
Brianne: No, thank you so much for sharing it with me. Yeah. I’m excited for you to get the glasses.
Taryn: Me too. Yeah. It’s going to be interesting to see people with like the blue. It’s not obvious, which is nice, but I’m like, you know, like Bono has it. Yeah. Johnny Depp has it, so like whatever., It’s fine.
Brianne: It’s a new trend you’re hopping on. That’s amazing.
Thank you for listening to episode 55 of No End In Sight!
You can find Taryn on instagram and twitter @taryn_gilligan and you can find me on instagram and twitter @bennessb. And of course you can find this show on instagram @no.end.in.sight.pod. I post pretty regularly to stories and I’ve even been posting to the main feed lately! And I share new essays in the No End In Sight medium collection through stories as well, so it’s a good place to find out when new stuff comes out.
As usual, don’t forget that I have a small Facebook Group called Chronic Hustlers for people living with chronic conditions who are self employed. It’s quiet but growing, and you’ll even find a few podcast guests in the group.
This podcast is supported by my cross stitch company, Digital Artisanal. When I’m up for it, I make simple modern patterns that you’ll actually want to hang in your home. I’ve got some fun fall patterns in the shop, and dozens of very simple icons that you can customize to your heart’s delight. I’d love it if you checked us out at digitalartisanal.com.