Lillian Appling and Lily Pierce

00:03 My name is Claire Appling. I'm 28 years old and today's date is Wednesday, October 6th, 2021. I'm in Wilmington North Carolina. My conversation partner is Lily Pierce, and she's my best friend.

00:20 Yeah, so, my name is Lily Pierce. I'm 28 years old is Wednesday, October 6th 2021. I'm in Summerfield North Carolina. My conversation partner is clear a playing and we are best friends.

00:40 So, can you describe the first time we met?

00:47 It's funny that you ask it in those words because

00:53 We met in kindergarten. So it's hard to visualize. What was the first moment that we became friends. Do you remember that first moment? I remember it being 1998, probably, was not cognizant of it being 1998 when it was happening, but I had just moved from New Smyrna Beach, Florida, to Reidsville, North Carolina, and we were both starting at Moss Street Elementary School in Reidsville.

01:29 I was just kind of anxious in general. I mean, first first day of school new state.

01:38 And just being comfortable. I don't remember exactly what happened. But you were just comfortable and fun from the beginning.

01:46 I think that our parents, remember it a little bit more vividly, right? Like, I guess she and my parents were all there and she remembers you just being this cute little brown girl with your curly, dark hair and serve from the very first day. I guess they, they saw you and we probably started hanging out in the very first day.

02:21 Yeah, I'm pretty much like attached at the hip until 5th grade when I moved back to Florida. So yeah, he's just being there and being the constant best friend for those like 6 years and it. Yeah, it is funny. They they describe it as us. Basically, clicking from from the start. And I think I did I I got off the school bus and at the school. And did I not know where to go? Or did you get on the wrong School Bus?

02:53 I remember okay. Is this the same story? I remember that one time I got on the bus because they were just filing kids to board the bus. And I was so young and ignorant about everything that I just like, got swept up in the bus line and ended up getting on the bus. And eventually the drivers, like, where do you live? Where am I supposed to drop you off? And it was, it was discovered that I had wrongly gotten on the bus and then I got back and everyone was like, why didn't you do that now? It's like, I don't know. They told me to, and they were like that. We didn't. I got those stories all mashed together. It's one big. How we met story.

03:43 Yeah, that was such a fun way for us to meet. Next up is what plant or plants? Are you looking at right now? I know you have an amazing jungle around you and I want to know, also are those plants. Are they in a good mood or bad mood?

04:01 Yes, but right now I'm sitting at my desk and I spend

04:06 In my time at my desk because I have friedreich's Ataxia and I work from home. So always sitting here, I have plants all on my desk that are beautiful and that I love looking at. So all the ones I was looking at are in a really good mood right now, but that's because the boys that are not in a good mood or probably it shoved back somewhere where I don't have to look at them. Is often the afraid favorite one near you right now.

04:42 Yes, my favorite plant is the heart leaf philodendron. Just the Classic with the shiny green leaves and easy to care for propagate excetera. So simple, but elegant, with its heart shaped leaves. Yeah. I wish everyone could see it, but these leaves are just almost waxy from from my view and just as beautiful dark green and

05:15 Not too dense, the leave there, a little bit spread out, but they just look like they're getting lots of good at fresh air and the beautiful heart shaped leaves.

05:22 Now you you brought up friedreich's. Ataxia. Can you tell me about what that is this water? That's so I didn't have any symptoms until about age 11. And then from age 11 to age, 28 was the progression of slurring my speech. More tripping up walking more having trouble with balance being more clumsy and just over probably that 10 year. It went from essentially normal to needing a walker for assistance to get around. So I was diagnosed with the disease at age 16 and

06:19 I am doing my best that I can with it because of course, when you have something really difficult to deal with, you can either fight back or you can lie down and take it and just say I'm defeated. So I try to fight. So I'm full of life, but I know that in a way that's a pretty, cuz a lot of people at the health condition that just sucks the life right out of them. So,

06:51 And how, how common is friedreich's ataxia? I think that most people probably haven't heard about it before.

07:01 You're right. You're right. So is crazy that it's a recessive condition, which means that neither the. Neither of the parents have to have it babe, but they both carry it in their genetics and then they can have a child with it. And so one and two hundred people carried the disease, which is quite a lot, but one in 50,000 people have a baby.

07:31 And I vividly remember every stage of this for better for worse. Cuz when the symptoms started like when we started noticing them, or when you started talking about them. I vaguely remember, being like 14, 15, 16, when we started to talk about it more because there was a period of time in like Lake Middle School where they thought, the doctor thought, it might be multiple sclerosis and one my grandfather fluid. Floyd field was devastated and really scared about the possibility of it, being a mess and equally, we were all confused about it. When it turned out to be friedreich's Ataxia just because we were unfamiliar with it. And around the same time. My grandmother died. You were diagnosed and I just felt like everything was so shaky.

08:30 Like, no pun intended, but I just, yeah, I was just like my best friend sturdy as a rock. Because I wish people could have seen kind of your personality and courage growing up of just nobody's walking all over me. Nobody. I'm not going to take people's junk this you were not going to get bullied or pushed around and so for me being warm, I don't know. I was more insecure and nervous. I think so having you is like the strong friend was super helpful and, you know, same with my grandmother. My grandmother was a big strong confident, Swedish women, and just ruled the roost. So when both of those things changed in such a big way, I definitely was, I don't know. My brain was all over the place.

09:31 I didn't think about our art as friends, cuz I feel like when we were younger, I was the super outgoing almost like popular bossy one and you were do you know a little more shy? And as you said a little more insecure maybe although I probably wouldn't have articulated that way I need 8, but as you got older and then by the time that we finally reunited in college, I felt like the rolls. It. Totally reverse, like, you were the really pretty awesome one, and I was like, kind of insecure about myself kind of like,

10:14 Like I said, it's like when switched, but then, but now it's been almost another 10 years, like, we're both at it at a good place for her, like good with ourselves and Carpeting. And, and we both,

10:30 Are are in good shape, like physically, mentally, emotionally. Yes, and that balance like insecurity and confidence balance, you know, the good and the bad. You're right. I think we both kind of balance that out over time into go just more about like, the development of that that art. So I moved around that moving around a lot in middle school, high school and eventually us coming back together. At the beginning of undergrad was actually an accident that we both went to UNC at Greensboro. And so our freshman year. We were so excited. I was just beyond excited, could not get over the fact that we both got accepted into UNCG, our freshman year in 2011. So 10 years ago. I just can't believe it. I'm sure if anybody were to listen to this.

11:30 10 years is nothing. But it feels feels really strange because, you know, we've been friends for 23 years, that is such a huge majority of Our Lives. The same these different phases is interesting. So when when College came around and we would go to parties and stuff freshman, sophomore year. I remember one of the big, I don't know about pivotal moment, but something that shook me up. A lot was when we would go somewhere and people would talk about, you aren't being drunk and I was like, she hasn't been drinking. She has essay at Axiom and just getting really upset because I just wanted people to just leave us alone and just why you'd make a comment, but even if she was, why would that be, you would have to make there and that was the first time I felt like I had to stick up for you and I don't know if I ever needed to stick up for you because you could have done that yourself.

12:30 I'm back and forth about feeling guilty sometimes about that. I did, I step on too many toes there that I do my part in, protecting my my friend. It was really upsetting to me. I so I'll get heated about it right now. Thinking about placement. Somebody better not say anything. As years of trying to hide my disability yet. It was to a point where it could not be hidden. And then on top of that when your age 18 and 19, that that's certainly not when people are the nicest in their lives, so no barely out of middle school, but just with some more independent, so it's just a scary mashup.

13:29 Self-loathing and shave and all of that stuff. Like it had to be the fool Ark to get to where we are now. Exactly. And another thing that happened in that time after we did our freshman year. We ended up being roommates sophomore. Part of, no, not Junior your butt sophomore, and Senior year. And at this time, they were doing some clinical trials for friedreich's. Ataxia who are the names of these clinical trials were done. But there were, what are they called? Double double blind, but some get sick. If you have the placebo. OK, Google answer. I remember you doing that for what 2 or 3 years?

14:27 How long did the trial last for the course of time? Probably at least five years if not more, but there were multiple different one. Yeah, and I just was completely wrecked over.

14:48 Hoping that you got the drug and not the placebo, which was our soft sophomore year. So we're talkin 2012, here to maybe early 2013, hoping that you got the real one because I so desperately just wanted you to be okay, when in reality you are going to be. Okay, no matter what. And then at the end of it, the I was, how did you feel when the trials were over and they were like, we've spent the money that we were going to spend.

15:22 It's a very disillusioning experience over the last decade. Probably that my dad and I have been very involved in the essay Community. Well, as stopping, my mom doesn't care. It's just that my dad is more into science and he travels with me to stuff but

15:47 We started out and we were so excited and energized about what was going to happen and over these treatments are coming down the pipeline and they're talking about they're going to start doing the gene testing soon and all of this stuff. But then year after year after year. It's like drug trials would just go nowhere and be over and every year it was like, oh it'll be next year. It'll be next year. So then eventually we've almost got initiated like we take good news and the fa Community with a grain of salt. Like get excited, but don't get so excited that you're going to be let down that we don't have a treatment in a month.

16:38 Yeah, it's it's almost like micro traumas each time. And so at the end of it, you're desensitized to to all that and thought of it like that. But that is so true. I think it it has been traumatic in some ways. And I mean, I don't know. You've seen the effect on your parents more than me because your mom is around, you everyday, helping with stuff. What effect do you think that?

17:11 Either at the overall or the outcome of these clinical trials has had on them.

17:18 Oh, why not over? My dad is. As I said, a moment ago, has made him jaded to the point that he's less keen on even watching to go to the big conference and I'll explain four for the other listeners that each year will not drink covid, but not really. We have a big conference every year in Philadelphia Pennsylvania, and it's a whole day of different scientists from around the world who were researching essay, and I've just giving us updates on the different treatments and and options that are being explored.

18:03 And unfortunately, for my dad, I made it hasn't killed his hope completely, but even going to the conference, he's less excited about that because we've just been

18:19 You know, got nervous. I've been let down and got nerve something, let down. And then with my mom, I feel like our relationship has actually gotten better than it used to be with her because I don't know. I think that with me and eating her more relying on her, her being my primary caretaker, at times, there been more attention because that is a difficult relationship between a caretaker in the disabled person. But also, we've gotten closer.

19:03 That's really good to hear and it's something that I definitely want to know is it gets off topic? But what how does your family describe the origin of her mom's maiden name?

19:19 Yes. Okay. Well, I know what I have the rest of the family. It's this story, but, my mom certainly does her last name is Maggie, and she says, that we are related to the McGehee keys and the Yankees. And that would originally happy is our ancestors. Got in trouble for something like stealing pigs and Ireland and our punishment was to get banished to the United States. Cuz obviously hundreds of years ago, I guess Coming to America. What's the best thing about a good? And she says, her last name was McGregor, but then when we got banished to the colonies, then they change their last name to McGehee.

20:19 It's kind of like a, a joker. A screw, you kind of thing.

20:25 So there's a possibility somewhere. Far back in the lineage. You can be related to you and McGregor.

20:34 Good, we'll have to reach out to him and and see exactly what are your hopes with somebody who has a say in 2120 100 years from now.

20:54 I'm hoping that they'll be born with it and be able to receive gene therapy as a baby and never had to deal with it. Because as a matter of fact, I guess good timing for this interview. But recently, it came out that more is happening with the gene therapy pipelines. And they're actually thinking that they might go to gene therapy trials, within the next couple years. Granted you had to take it with a grain of salt because can't get your hopes up too much or you'll get laid down, but they made the workshop and put it on the website, to your essay. Org. And my dad says that when the money starts blowing, things are about to happen and he says, there's been a lot of money flowing with the pharmaceutical companies.

21:54 Really? Okay. I didn't know what they were doing, money wise, and your dad's a money guy. So I really trust his, I trust his gut feel and is now says on that. Yes, and can I just take a quick moment to explain what is gene therapy? I mean, not that I'm a scientist at all. I'm actually an English major and a writer by profession, but essentially gene therapy would be not just reading the symptoms of my disease friedreich's Ataxia, but it at the stores because it what it is somehow they inject the right genes in a virus and then you would be injected with the virus and I would go in your DNA and literally change your DNA to the way. It's supposed to be.

22:48 And then you would, I guess to physical therapy and stuff, to get up your strength and be able to do everything and be able body.

22:59 And you've been doing physical therapy or similar, type training, and exercises for how long?

23:08 Seven or eight years.

23:13 I mean, just that's just amazing. That's just amazing to me. I mean, just so consistent sand.

23:22 That's really incredible.

23:25 Yeah, working out is extremely vital. Well, I would say to

23:34 But honestly, exercise is great for everyone is very good for your body, holistically mentally, emotionally, and physically me with my disease. It helps me physically, maintain some abilities, but it also helps me mentally to feel like a badass to brush and the serotonin and whatever else that will do his fourth, when you work out and especially when you're in a position, like mine, where it is, very easy to get stuck, physically and figuratively and and start feeling sluggish and May and then if I go to the gym and work out, I feel so good after Birds.

24:27 Yeah, that's good. I want to switch gears with a little story and then we can come back to any things as they come up there, and then we'll switch gears. So, we grew up in the time of my space to where little bit Prix, gen Z, and that we didn't grow up with social media, our entire formative years, but when we were preteens, my space became popularized. And we all got our little accounts. And this is kind of the scene or emo area where my space was really popping off, and it was a great time to be alive. I'll tell you that. That was, that was a great, funny hysterical, time to be alive. And I remember this time you and I were connected on MySpace, probably. I don't know, 20 2006,

25:22 2005. Something like that and on your profile it said you religious views were what I read as Protestant.

25:33 I thought you were protesting religion and you put that you were protesting on your page because I grew up as you know, and without religious environment. We didn't really talk about, it wasn't part of our daily lives. The closest thing. I got to it as my spent the night at your house on Saturday night, sometimes and then we would go to Gideon Grove. United Methodist Church up in Stokesdale. And that would just be what? I know six-seven times a year. I don't know exactly how many times, but I thought it was great. I had no idea what was going on, thought it was great people. There were incredibly welcoming and nice. So I will likely my experience. I did get with religion was really positive, but I didn't obviously know that there were different types of Christianity or anything until I was a teenager. And so that the protest it when I finally asked you about it years later, it was actually Protestant.

26:31 Which blew my mind. I thought that you were protesting religion all this time, and it turned out you were Protestant to the wrong impression there and just thought you will like a reasonable conclusion to draw. I thought you were an anarchist. I wanted to go in because I know where was it? Played a really big positive role in your life, especially over the past, like 10 years, and I wanted to know how your religious views have changed over time.

27:10 Yes, sir. So I grew up in the United Methodist Church him and for those sisters, who don't know, the United Methodist Church has more of a progressive, kind of a sect of Christianity, not not politically, but I mean, things like, women can be pastors and I don't, I'm allowed to wear pants in there. And then there's always the time. Of of where did the traditions and things that you've been raised with? When does that transition into? I personally individually? Believe in this that or the third and it's hard to pinpoint exactly when that happened. But I do have an interesting story because the clickbait title of this story would be

28:10 How the Bible made me? Stop being a right-wing. Extremist 10 ways. 10 ways. The Bible can make you stop being a right-wing extremist. Everyone will read it when you to write that today. I'll put it in an essentially, if you were on YouTube like 5 years ago. Maybe you saw a little bit of this, but it was very easy to fall into this Rabbit Hole of like getting pulled into that really extreme. All right, kind of people because you watch a video and then is recommending more and more, and more and you are going further down into a spiral. So eventually I had become like a super all right-thinking person and then my senior year of college. I was an English major, as I said earlier, and I

29:10 Okay. Yes, and I I took a course called literary study of the Bible.

29:18 And this this is a little embarrassing to admit, but also, unfortunately, it applies to most church-going Christians. But aside from the scripture that we would get on Sunday mornings. I didn't do that much Bible reading on my own. So for this glass, it was the most of the Bible I'd ever read in the shortest amount of time. And

29:47 I don't believe that the Bible has some kind of magical power in and of itself, but I do believe that the Holy Spirit can move in your mind and heart when you're reading things or with anything about the time. But with reading the Bible to, and as I was reading things, especially reading about the life of Jesus and his teachings, I was feeling convicted, like, the way that I talk to people the way that I look at the world, the way that I treat people just not line up with what Jesus is saying. We're with what I'm supposed to be as a Christian slowly over time, that began a process of me, actually being able to introspect on myself.

30:42 And realized that I had gone completely wrong.

30:48 Sarah.

30:49 So now I'm in a completely different place and the Bible is what helped me start to come to that place.

31:00 And during this the this would have been your senior year would have been 2015 2016, right or the 2016 2017. You know, the election of Donald Trump was in 2016. And that's when this our right wing, super right-wing internet culture was I feel a moose fervor. Yeah, and at that time, I I remember when you were posting all this.

31:34 That the conservative stuff. And when you were supporting that Administration, I thought, you know, he's he's out here, blatantly making fun of you and you're supporting him, you know, this must be the strongest power of, I don't know, addictive confirmation bias. Kind of rhetoric that it can just pull in.

31:59 Anyone and make it stick. So you just as literary class study, the Bible started to change your thoughts. Did it feel like you were detoxing or how did that feel to you to go through that process?

32:17 It felt like I had been looking in a mirror that was so foggy that I could not actually see my reflection. But then, as I was reading, the Bible is like I was wiping the mirror and being able to see myself more clearly.

32:36 That's amazing. I really like that that image and it makes sense. Right? And that's what I think it was intended to do coming from my

32:49 Kind of point of view of, I don't know about the teaching. Of course. There's a whole conversation to be had about all of the Christians who have not been very better. People by their religious viewpoints, but that it, but it is supposed to make us better.

33:15 Yes, exactly. And

33:20 What effect has this transition? The Renaissance religious Renaissance for you. Had on how you view your

33:33 Challenge with friedreich's Ataxia, has it been has it changed that at all.

33:38 Yeah.

33:42 Like a brand-new strength and renewed, determination to Justin Bloom where I'm planted and just trust, God and just go with the flow. You know, I, when I look back on my life, I, I do see ways that God was working all along. But that was in a wheelchair turning point where it was, like, I actually started to have faith instead of just going through the motions, because I was raised that way.

34:17 And I wish during the the time. Of like 2015, 2016. I would have been more active in our friendship because I I just took a back seat and was

34:32 I had decision fatigue. I was exhausted about the election. I felt like it was hopeless and once again, another kind of Art in a relationship. I felt one. I lost I lost my best friend once almost when she got this diagnosis in my mind, you know, and I had to go through that whole, you know, turmoil of what does it mean for her for her life. And this time I thought, well, she knows, she knows my views and so we're never going to have that friendship again. And so I lost everything again, which was

35:10 So devastating, I think, I don't know. I really struggled with that, and I had to just think I do more in a relationship in a way, the same way. I had to kind of more in my relationship with my dad when I was a teenager cuz he just wasn't around, you know, cuz I like, okay. This is how it's going to be and so it was, I just felt so sad cuz I wanted us to have more experiences. And I, I didn't know at that time, if you had the type of essay that had the heart condition or not. Stop, like how much time do we have together?

35:48 So I'm really glad that that we're friends still now more than ever, you know, so many fun phases and

36:02 Yeah. That's just been. It's been a fun wild ride. I'll tell you that much. I don't want you to feel like you've ever done anything wrong.

36:13 You like everyone else. We're doing the best we can with the information we have at the time.

36:21 And it's easy to get swept up into things but luckily people can change their minds.

36:33 That's great. Is there anything that you've never told me that you were going to tell me now?

36:42 You go first while I think of something. Okay. Let's see a touchdown this little bit earlier, felt a little guilty for things I've done and have it done. But I guess it was short. I've always wanted to protect you. I will always protect you and be a good honest, friend moving forwards and I wish I didn't drink so much in early college that we could have spent more time together, but we were doing it together. We were and also you, you've had such a Monumental effect in every area of my life. Between the first time we met through all the experience in Girl, Scouts. We had together you and into the

37:42 Dance classes. And so you taught me how to do the Jazz Square in the Grapevine, dance out on the playground. And that's when I started dancing, which affected my life for years and I was just messing around backstage and all of our dance recital. Leading, to you missing an entire dance one time with IV. We just the shenanigans are NeverEnding and I cannot wait to continue those Shenanigans for years to come and that they're all start crying and that doesn't happen to be nice. It doesn't have to be nice. And you can be mean if you want to say something meme.

38:29 All I want to say is that I appreciate having a friend, like you.

38:37 Place that our friendship is like, you know, we just talked yesterday or if we talked to these files to go.

38:46 We pay grade back up.

38:50 Don't make me cry. I had to meditate before this so that I didn't cry. I had to actually sit and cry as much.

39:05 I'm so proud of you endlessly proud of you. And I think even with the arcs and Ebbs and flows of our relationship. Everyone that I tell Joey. I'm saying I'm saying Lily all the family. I say we're really not going to do this. This weekend are just so happy. It's almost like an anchor in their lives that we still have our friendship. So that's been

39:27 So amazing. Thank you for being an amazing friend. Thank you for sitting with me today. I appreciate it. And I love you so much. Have a nice conversation with me. Thank you to everyone who might listen to this and I

39:46 Yeah, I just thank you.