Erin Taylor and Her Mom Lily on Living Fully with ALS

Meet the inspiring duo behind the @unsteadyandready Instagram account, sharing life with ALS.  Here, I sit down with Erin Taylor, diagnosed with ALS at 23, to hear what it’s like to build a life in your twenties while your body changes fast and your natural voice fades.  Erin and her mom Lily show us how advocacy, humor, and everyday love can keep you feeling like a whole person even when ALS is always in the room.  We chat about:
• Grieving lost dreams and rebuilding purpose through ALS advocacy
• Losing a natural voice and using eye gaze with an AI clone voice
• Choosing authenticity online to help others feel seen
• Managing dark moments by focusing on what we can control
• Finding joy in small outings and planning energy for big experiences
Erin shares her heart to educate people that ALS can affect anyone, even someone in their 20's.  She said she didn't know that was possible when she was diagnosed.   If you'd like to share Erin's message, please send this episode to a friend.  Thank you. Hugs, Lorri

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Transcript

Welcome And Lori’s Mission

Paul Carey 0:08

Hey, I'm Paul, and I'm Christian. Welcome to I'm Dying to Tell You. Inspiration shared by our mom who is dying from ALS.

Christian Carey 0:16

There's no cure for our mom or anyone else with ALS. But right now, she's on a mission to find and share stories of inspiration.

Paul Carey 0:23

Coming to you from Cincinnati, Ohio, we're happy to introduce the one lady we've both loved since the first day we laid eyes on her. The Queen of the Queen City, our mom, your host, Lori.

Meeting Erin Through AI Voice

Lorri Carey 0:52

Hi, I'm Lori, your host of I'm Dying to Tell You. Thank you for being here. I really cannot thank you enough for listening in and for supporting this podcast and this platform to share hope and inspiration across the world. You all mean so much, and I really, really appreciate you being here. So thank you. Today I'm dying to tell you about my friend Erin Taylor and her mother Lily Taylor. And you might know Erin on Instagram at unsteady and ready. Unsteady and ready. Yeah, Erin is unsteady because she has ALS. She was starting to have symptoms of ALS at 22, diagnosed at 23, and I think right now she's 26. So she is in the thick of living a young life with ALS, but she isn't alone, that is for sure. If you follow her on social media, you know that she has an angel by her side, her mother, Lily Taylor, and I love how they share their journey. I mean, just the love between the two of them is so heartwarming, but yet the joy that they show during this incredibly tough time is really inspiring. I have known for a while that I wanted to catch up with Erin, and then I got to thinking about it, and I was like, they're kind of a package. When you think of one, you think of the other. And so I reached out to Lily and invited her to chat with me as well. So yeah, bonus, you're gonna hear from both of them in each of their perspectives on how they are living a full life despite the many challenges that they both have daily living with this disease. Okay, if you've been listening in, you know that I talked to many people who have actually lost their voice. Erin is one of them. So I sent her the questions ahead of time, and she used her eyes to answer them on her computer, and then sent me the files back with all of her answers, and now I'm working backwards to put it all together. And Erin is actually using an AI voice that best represents her natural voice. So it's really amazing. It's gonna sound like a natural voice with an inflection and pauses and everything. So that's really, really cool. So I'm gonna play my chat with Erin, and then right after that, I'm gonna share my little conversation with Lily, her mother, such a wonderful lady, and she was a single mom raising her kids growing up, and then she was an empty nester at the point where Erin was diagnosed. So so many unexpected changes with this diagnosis, but I love how she tells me she wouldn't have it any other way. I'm so excited to share Erin with you. She lives in California, she was raised there, and then right she graduated from college and earned a degree in botany sciences right before her diagnosis. And now she is spending her time living life, still doing a lot of things, but every day making other people smile, giving us hope, and sharing joy with anyone that's following her. Okay, here's my chat with Aaron. Let's go. Hi Aaron. Thank you so much for taking the time and putting in all the effort that it takes to type these answers with your eyes and create this episode with me today.

SPEAKER_00 6:32

Hi Lori, so nice to meet you. This is pretty cool to be here. I appreciate the chance to use my clone voice too. So thank you. I love that you asked me.

Lorri Carey 6:41

Of course, of course. Ah, I'm so honored that you're here. Now, if people are following you on Instagram, you do a lot of videos, which is amazing. And uh people can see, you know, they can look and see kind of how you're progressing with your ALS. But for those who haven't followed you yet, can you give us an idea of how ALS has affected you? Because we know it affects everyone differently.

SPEAKER_00 7:23

Brutally. ALS is the worst. It's basically affected every part of my physical body. The least affected, which I am so insanely thankful for, is my breathing and my diaphragm strength. Um, fingers crossed, sadly, I would say that my arms are the most degraded, my voice is pretty far gone, and my legs are stiffer than a board. I mean, I'm grateful for the muscles in my legs. Uh, but good grief. Everything sets off my spasms. Uh I call it having leg erections. It always happens when I'm sitting down and my legs just shoot straight out, knocking everything in front of me out of the way.

Dreams Interrupted And New Purpose

Lorri Carey 7:55

Thank you for that, Erin. Yeah, that's one thing that I do not have, but I really understand the gratefulness of having a solid diaphragm and really good capability with your breathing that seems to be, you know, really heavy on everyone's mind. Living with the LS when you go to the pulmonologist and have to do all of those breathing tests and find out what your current score is. Um seems to be the most nerve-wracking. So I get it. Yeah, I understand. Erin, at twenty-three, when you were diagnosed, many people are just beginning their adult lives. What dreams did you have then? And how have you reimagined your purpose ever since your diagnosis?

SPEAKER_00 9:01

OMG, so many dreams. Um, ALS surprised, attacked me, and hit me over the head. God, it's just so hard to be forced to let go of most of my dreams, still struggling a little every day, accepting that loss. I really briefed. In college, I studied botany and I loved it. My dream was to work in the field in the middle of nowhere, immersed in the plant world. Uh for me, what made letting go of this dream so much harder was that I got a little taste of that life. Right before my diagnosis, I landed a job doing exactly that. I was in the middle of Nevada with no services, and I was identifying invasive plants in burned scar areas. It wasn't easy. It paid like shit, and I only showered every 10 days. But it was one of the most beautiful times of my life so far. I can still taste that excitement I felt. Um, although sadly it's getting more faint as time passes. The thing I found frustrating was that immediately after getting diagnosed, I was getting questions left and right about what are you going to do now? WTF, I had absolutely no idea. As time has passed, I now have found a renewed sense of purpose by sharing what's happened to me and being an advocate. I like helping people feel seen like they aren't alone in this. This goofball girl in her twenties is over there sharing her daily life and struggles with ALS. It's nice to be able to hear I help others.

Losing A Voice And Finding One

Lorri Carey 10:39

Well, you definitely do help so many other people, including me. So know that. And you know, as you were talking, I was thinking about Sam Telcamp. Like the same timing for her, and I know you know her, you know, hadn't graduated college and had her job and what she loved doing, and got a taste of it, like you said. And I never had really thought about that in that way, you know, getting a taste of actually doing what you love and doing what you worked hard for in college, you know, to get to. So um, you know how they say you don't know what you don't know, but since you had that experience, uh, you know what you're missing. So yeah, that would be hard. You mentioned in a video that I saw that you were embarrassed for people to hear your degraded voice, is how you put it. How has losing the physical sound of your natural voice affected the way that you see yourself? And what has the process been like emotionally as you transition to a computer-generated voice?

SPEAKER_00 12:13

Yes, so true. Lori, I absolutely hate losing my voice. I mean, I was always a quiet person, so realistically, not much has changed, but I used to be so funny. I didn't say much, but when I did talk, I would make someone around me laugh with a stupid one-liner. Now, when I try to make a joke, I just get a bunch of blank stares because no one understands me. Lately, I've been reduced to just talking when I need something. It feels like me, Aaron is slipping away. And honestly, I feel like once I switch over to my AI voice completely, I will lose all of me. Even with the little bits I can say now, I can still somehow be a part of the conversation. But once I'm dependent on my eye gaze, I'm terrified I will never be a part of it again. And even though I've been advocating for AI voice clones, because that's really the best we have right now, it's just something I still struggle with.

Lorri Carey 13:12

I understand, Erin, but I will say that everything that you are doing on social media, you are educating people about the importance of having a voice. And whether it is a natural voice or an AI voice, you are showing the struggle and the importance of being a part of the conversation. So I really, really hope that everyone will see that. And when you get to the point where you are solely reliant on the computer voice, that you are still brought in to the conversation, even with the delays, you know, that it takes and all that. And the other thing is know that we know you're funny. You make me smile, you make me laugh, and I know I'm not the only one. You might not have that instant, you know, comedic timing with using a computer, but you are still funny and have your great sense of humor with you, so remember that. Through all your videos that you share, you inspire so many other people, including me. How did you put any doubts that you might have had to the side in order to have the courage to share all that you share?

SPEAKER_00 15:04

And you inspire me, by the way? So it's reciprocal. This is such a great question. Uh, not many people realize this, but I I absolutely hate being on camera. I hate being looked at, having my picture taken, being recorded, all of it. If I could be invisible, I would be. But my mom and I had a major sit-down, and she is the one who convinced me to uh share my story. And she said, Erin, I'm gonna convince you to get out of your comfort zone. And I'm paraphrasing here, but she said, if we didn't know young people could get ALS out of the blue, then lots of people don't know that either. I finally agreed, but with the condition that we would actually show how crappy ALS is and that I got to be my authentic self. No filters, nothing fake. I come with dirty hair, acne, thrifted clothes. I just don't have the energy for being fake. Social media is most of the time people only sharing their filtered life.

Lorri Carey 16:03

Well, your mom is very wise. Great, great point that she said if you guys didn't know that someone so young could get it, then there's probably a lot of other people that don't realize that as well. So, and yeah, I love that you are you. You are beautifully you, and that's why so many people are following your journey, and that's why you inspire so many people because you're keeping keeping it real, and I love that. So keep doing that, keep being you. That's what people can relate to, so yeah. You have become such a bright light for so many people living through really heavy things. What do you draw light from when you're feeling down?

SPEAKER_00 17:04

If you knew me before ALS, you would probably think bright light? Erin, I didn't even realize this was happening until I started getting DMs from followers. Uh, having a positive vibe is kind of how I approach a lot of my life. Maybe it's a natural defense against crappy things I've come up against that I've developed. And basically, I really try to not dwell on things that I have no control over. Lori, I will drive myself insane if I dwelled on having ALS. So I don't. Thankfully, ignoring limits my feeling down moments. But obviously, because I'm human and I have a generally unforgiving disease, I do feel the weight of my situation bearing down on me at times. When that happens, I try to let whatever thoughts and feelings I'm experiencing come in and then wash away. To me, it's not so much as drawing light from somewhere, but more of not letting the darkness take over. If I do have a dark day, it's so hard to get out of my head. But I regroup by just being in the moment and then actively thinking about what I can control. And eventually my mind will take me to a better space. We do what we can to mentally survive this.

Lorri Carey 18:18

Yeah, that's for sure. And Erin, let me just say that you are putting so much of yourself out there. Know, really know that everyone who is in your community is there for you as well. So, you know, lean on people that are in your tight circle, people that are following you, people that are just a part of your journey, not just a part, but you know, people that you know from social media know that they are there for you. I'm here for you. We all are here for you. As well, yeah, don't forget that. Is there something about who you are now that feels stronger, clearer, or more defined than before ALS?

SPEAKER_00 19:29

Another powerful question. I've become more introspective about a lot of things uh since being diagnosed. I think that one thing that really became clearer for me in these last two years is that my definition of what it means to really be there for others has evolved. Um, before ALS, I would help someone physically because I was very strong and able-bodied. People relied on me for that. Um, if someone needed help carrying something, I was there. If someone needed a ride somewhere, I was there. I really like helping make others' lives a little easier and less stressful. But then as I lost my physical ability, that all stopped. And I really struggled with the feeling of that. I felt useless, disappointing, and like I couldn't make a difference anymore. If I couldn't lighten up someone else's load, what was I good for? After I started posting, I realized that I could still be helpful to others, but in a more emotional way. That realization made me feel whole again. I hear from so many people all over the world how I help them, but actually they are the ones making a difference to me by giving me purpose again.

Advocacy That Creates Meaning

Lorri Carey 20:40

I love that. That is beautiful. Exactly what I was just saying. I'm happy that you're getting filled up, you know, by your community as well. And by the way, you're doing great. Oh you are awesome. Your answers are so thoughtful, and I know you spent a lot of time. Thank you so much for this. What brings you joy, meaning, or even a sense of accomplishment today?

SPEAKER_00 21:18

Joy watching my new dog do zoomies from couch to couch, seeing my grandfather trying new coffee places with my mom as we travel around. But what brings me meaning? For sure it has to be advocacy for this disease. When I got invited to showcase AI and ALS at Parliament in Vienna, Austria this past year, I was beyond excited. I mean, who gets to be flown business class to Austria and appear before Parliament and then get front billing that same night on the national news? Um, I will never forget that honor. It was the coolest thing ever. Um, prior to this, if it was weird because after receiving my diagnosis, I I just sort of assumed that because of my age, I wouldn't really do anything that I could be proud of. I was selling myself short. Over time, I have seen the value of bringing awareness and advocating on behalf of the community. A lot is done through social media nowadays. Um, connections, opportunities, etc. I feel accomplished and definitely lucky to be able to gain a big following and shed a light on this disease. The bonus is getting to meet literally the coolest and strongest people uh globally with this disease. And this also brings me so much joy.

Grief Advance Directives And Humor

Lorri Carey 22:36

Oh, that's great. And yeah, you're so good at it. You're such a powerful advocate. And the clip that you're talking about, I'm gonna follow up and ask you if you have a link to that. I'll put that in my show notes. I'd like to see it, but I'd like to share it with everyone as well. And show notes can be found on the website and my Facebook page, both at I'm Dying to Tell You podcast. Okay, the emotional weight of ALS is incredibly heavy. What have been the hardest emotional moments for you and how did you manage to move through them?

SPEAKER_00 23:30

ALS is like nothing I could ever imagine going through. God, I honestly cannot believe that I'm not crying every moment of every day because of this shitty disease. One moment that happened very recently was during a doctor's appointment. It was a regular visit with my palliative care doctor, um, who, by the way, is the nicest person and one of my favorite doctors. But the doctor brought up my advanced directive that I had submitted right after my diagnosis. It basically said that I don't want a tracheostomy if it came down to it, obviously, because it's part of the job. Uh they asked me why I had decided that and whether or not I had changed my mind. My question is this how do I explain the feelings behind my decision without breaking down and sobbing? Which is exactly what I did. I sobbed and I sobbed hard. That was an emotionally hard moment for me. I do cry. Sometimes I cry alone and sometimes I cry with my mom. But then a few minutes later, one of us will say something sarcastic and both start laughing.

Lorri Carey 24:36

At your age, you shouldn't even be thinking about those kinds of things. And I'm just so happy that your mom is there for you, that the two of you have each other. I know firsthand the value of having energy, using your energy wisely with ALS. How do you decide what to give your time and your energy to now? What matters the most?

SPEAKER_00 25:16

This is hilarious because we talk about this so much in our house. I'm literally exhausted constantly and I turn a lot of requests away. By nature, I've always been an extra sleepy person. So when I wake up, I'm basically ready for a nap. So now it's extra hard. I really focus my time and energy uh on things I feel are most memorable and meaningful. To me, that's family first. Um experiences big and small and traveling. I mostly rest at home, but maybe once or twice a week my mom and I will go try a new coffee roaster or get a little sweet treat. I love those little trips because it gives my mom and I a chance to leave the heaviness of my disease behind and just hang out together. The bigger experiences take a lot more planning and obviously a lot more energy. Um, skydiving was an experience for sure, but it took me a week to recover. And traveling is the same. After a trip, it's a rule: no plans, no appointments, no anything, in order for me to recover for at least a week.

Being Young And Still Alive

Lorri Carey 26:21

Yeah, all those big adventures, well worth it for sure. Yeah. Well, I love that you're being very intentional with your time and your energy. So I think that's really, really good, you know, for your overall mental health and for your mom, you know, as well. By following your social media at Unsteady and Rennie, it is clear that ALS shaped your desire to advocate and share your story. What do you wish the world understood about young people living with a terminal illness?

SPEAKER_00 27:08

You are exactly right about that. Before diagnosis, I was definitely more of a scroller instead of a poster. But getting diagnosed with ALS at 23 was a straight up, what the hell just happened? Uh moment. It didn't feel real and it sounded so terrifying. One second I'm just figuring out my life. And the next I was being told to not bother doing that because it's just going to end early. Facing your own mortality that young changes you fast. Most people my age haven't been through anything truly life-shattering yet, me either. Uh, then suddenly, bam, I was handed a terminal illness, and not just any illness, but A-L-E-L-S. My question is, how is anyone at any age supposed to be ready for that? And here's the part people don't always remember. I'm still young, I'm not done. I want to go out, laugh, travel, party, and experience the world. I haven't done all the things yet. I might look fragile, but I'm not. I'm still very much alive. I'm trying to take in as much life as I can right now because I don't have the time people might assume I do. And I'm tired every moment I'm doing it, but whatever, I still have a great time.

Lorri Carey 28:20

Yeah, I love that so much. And a great message to everyone, you know, don't assume that you cannot do something just because it's gonna look different. There's gonna be extra steps and extra effort. That doesn't mean that you don't want to try, you know, and adapt to be a part in a way that you can. So I love that. And your adventures, big or small, they give you something to look forward to, and I think that is really, really important. I had a laugh because I'm looking, I'm like, I sent you a lot of questions. You're so amazing. Thank you for answering all these questions. With your mom being your caregiver, what have you learned about each other through this whole journey? Things that you might not have known before ALS came into your lives.

SPEAKER_00 29:37

My mom has always been larger than life to me. Um growing up, I idolized her. The biggest thing that I've learned now, though, is that she is merely a human. I never realized this about her before. She was this super mom who raised two kids on her own, had two jobs at times, and still made time to make us feel special. She is absolutely still that person, but I have learned that she is a human and not some invincible, untouchable being. She is funny, chaotic, driven, grateful, kind, and and sort of sarcastic. And loves to play pickleball, where she says is one place she doesn't think about ALS. So she has a standing date once a week to play. I know kids put their parents in their own category separate from everyone else. I did the same thing, but now that we are closer than ever, I see that she is a person.

Lorri Carey 30:27

Ah, I love that, Erin. I love how adult children circle back and look at their parents differently and get to know them in a different way. I think it's really beautiful and the relationship that you and your mom have now, you know, being so close and going through ALS together. I can't even imagine, you know, the gift that that is for both of you to be a part of. So that's really cool. Can you share a moment where you and your mom actually got each other through something really hard?

SPEAKER_00 31:18

Oh my gosh, Lori, I'm gonna start crying now. I have a million different times that I can think of, and I just can't narrow it down to only one. I mean, my mom is my favorite person on the planet. She is my rock. She's who I lean on when life gets hard. She's who I look to for advice, and she is my fiercest advocate, like you have never seen. When I was just diagnosed, we were in shambles because let's be honest, who wouldn't be? Uh, we knew that the road ahead was going to be uncharted territory for both of us. But we both knew that we would walk that road together, no matter what happened. And by God, has this road been treacherous? It's less of a paved road and more like climbing Everest. My mom says that with my brain and her tenacity and physical ability, we are like one whole superpowered person making our way through the climb.

Depending On Mom And Legacy

Lorri Carey 32:12

That is so true. I can see that. And I'm excited for you to hear my conversation with your mom that is gonna be on the end of this episode. You are asleep when we talked the other day, but you will see the love that she has for you as well. So can you tell me what it feels like to be in your 20s and then you've already left home? I think you left home at 17, um, and then you got your degree and you had a job, and now you're back with your mother. How does it feel to rely on your mom in these new ways that you are?

SPEAKER_00 33:05

Relying on anyone fully like I do would be hard, but being my mom, it has taken a lot of swallowing pride. Before I was diagnosed, my mom must have asked me to move back home at least a dozen times. Come home, you can regroup and find a better paying job, etc. But I have been so stubbornly independent my whole life. I never wanted help from anyone, and I would have felt like I was going backwards if I moved in with my mom. Plus, I hate rules, yuck. But without missing a beat, my mom came up to where I was living in Utah, dealt with all my issues, packed me up, and moved me home. I'm so grateful. But at the same time, having to receive this much help from my mom when I should be living on my own is a hard pill for me to swallow. Um, I hesitate saying this because my mom is listening today, but it worries me because she isn't spring chicken anymore. I see her getting older and it is going to get harder and harder every year. Uh, isn't it the natural order of things for me to now be taking care of her and not the other way around? But now, after two years, I I have gotten used to it and honestly, it is really fun hanging out with her all the time. I just wish ALS wasn't always in the room with us.

Lorri Carey 34:22

Yeah, yeah, I'm sure. Let me ask you, what do you hope people remember most about you? Not just as someone with ALS, but as Aaron.

SPEAKER_00 34:40

God, I really hope people remember my tattoos because I spent a lot of money on them. I'm just joking, kind of, but seriously. I hope people remember my introverted, quirky personality and my smile, that I was creative and funny and was on my way to becoming a botanist. That I loved being six feet two inches and wearing five-inch heels. That I moved away from home at 17 because I wasn't scared to figure it out as I went. And I also hope that people remember my zest for life. Um that I wouldn't let any fucking disease stop me from really living.

Lorri Carey 35:11

Ah, so many people are gonna be happy to remember all of that about you. And in my show notes, I'll put some photos of you with your tattoos so listeners can see those as well. Um again, I love that you are you and you are real, you are giving, you are honest, and you make me smile. So, so many things. Okay, we're to the last question. I ask everyone that comes on the podcast, Aaron, what are you dying to tell us?

SPEAKER_00 36:01

I, Erin Taylor, am dying to tell you that you are not your disability, you are not your sickness or your diagnosis. You can rise up and face whatever it is that's staring you down. It won't be easy, but you are so worth the effort.

Lorri Carey 36:17

Yeah, we are so much stronger than we realize we are so much stronger than we give ourselves credit. So amazing. I love that. Thank you, Aaron. And Aaron, you're the best. Thank you for doing all of this.

SPEAKER_00 36:37

Lori, this was fun. Thanks for giving me time to really prepare and for asking such inspired and thoughtful questions. I appreciate that. And it was so nice to have met you.

Lily On Caregiving And Daily Reality

Lorri Carey 36:46

Same, same, and all my pleasure. Keep in touch. Okay, to my listeners, I was able to catch her mom, Lily, while she was on a little break. Erin was still sleeping and she got up early and talked to me over Zoom. So I'm gonna take you to a quick chat with Erin's mom, Lily Taylor. Let's go. As everyone knows you and Erin and follows your journey, you cannot think um one without the other. And I love that so, so much.

SPEAKER_02 37:34

Oh. Oh, thank you. That's so sweet. Hopefully, I don't disappoint because I am just kind of the mom in the background.

Lorri Carey 37:42

I know you are way more than that. All right, so tell me, you are Erin's primary caregiver.

SPEAKER_02 37:52

She's lived in a different state when she was diagnosed. Um, because she had graduated college and she was really uh digging in trying to find a career. I mean, she was uh got her degree in botany. And so she had um found a fantastic job uh working remotely in the deserts of uh the Great Basin area, which is like Nevada, kind of that high desert area. And so uh when she um was diagnosed with ALS, I immediately, I mean, I was all I ran out there. I got the diagnosis with her. I was in the room. And it was just immediate where I just said, well, that's it. You're gonna come home with me. Pack you up and we'll move you back home. So there was never a question in my mind, she's got a dad. You know, we've we've been divorced since she was a baby, but um um it was always just I'm just gonna take care of you. That's just how I just felt like as a mom, like it's just my job and I'm gonna do that. So I was her parent, a primary caregiver, and I still am. Um about six months ago, I um I also work and I also take care of my dad. My dad's still alive, he's 92. Um, it's gonna be 93 here, and so I take care of his financials, and so I'm real busy. And I just thought, I can't, I just I really need someone to come in and help me. So she does have a a gal that's her age that comes in and helps me so I can go to work. So she comes three three days a week, so part-time, but I'm I'm Aaron's primary caregiver. Yeah.

Lorri Carey 39:32

You don't sleep.

SPEAKER_02 39:33

I know I I really have a lot, I really have a lot going on. But I'm one of those type of people that kind of thrive on uh having a too full of a plate. Yeah. Yeah, I get it.

Lorri Carey 39:45

No, I get it. Yeah, yeah. Um when people watch Erin's videos online, they see her very strong and even joyful. So, what is something about her day and day that people might not see that you think is important to know?

SPEAKER_02 40:10

Um primarily what people see is just exactly how she is. She's she's always been a very positive, very joyful person, just that's her nature. Um, and she and she's totally shocked me like how strong she is. I think on a day-to-day, like if you're looking for some dish, you know, I mean, she's like um a real um what is that called when someone's a perfectionist, you know? Oh and so that makes her a little bit personnikety, and I'm always having to like raise and lower her bed just a certain amount because she has to have it a certain way. Um, so that kind of stuff you don't you don't get to see. But um I think another thing you don't get to see is that she's she's really has a she has a heart for just people in general, and she is accepting of everybody and super polite uh to everybody. She may not agree with whatever's being said, but she'll she's so sweet. She sits and listens and smiles and treats you, everyone exactly the same. Um and I so yeah, I guess I guess she's what what people don't see is that she's a totally like a whole package. And I know that I sound like I'm just really glowing the reports of my daughter because nobody's perfect, but she really is has and has always been kind of a remarkable person. You know, she's also kind of an old soul. Um she she really I know you can't tell because she's got all those tattoos and um she's had her hair, you know, a hundred different colors and different shaves and all kinds of things, but she's really a sweet person. And like I said, an old soul, like she's got that old if if you if you knew her, she has that kind of that old way about her, you know, it's hard to describe. Yeah, you know, like it's almost like it's almost like she, it's almost like my mom who's who's gone has like come back up in her or something. I don't know. I don't believe in reincarnation, but it almost seems that way to me.

Lorri Carey 42:11

Yeah, that's cool. That's yeah. So I know that you mentioned when hearing out the diagnosis that you knew in your heart that you know you would be taking care of her because you're a mom and that's the instinct.

SPEAKER_02 42:27

Yeah.

Lorri Carey 42:28

So what does it meant to you to be able to do that? Because you know, you could have been in a different position where you had to work full-time or yeah, you d you might not have had the physical capability at this point in life to do that. So what does it meant to you when you have a moment to pause and say, I'm so grateful that I'm able to do this?

SPEAKER_02 42:58

Yeah, I think that I think that's what it is, is I it's hard, Lori. I mean, it's kind of like when you have your kids when when you're uh you know younger and you have these new new babies. And I was you know, the single for uh so my kids were tiny, tiny. And um, it was hard, it was really hard. And a lot of times you go to bed exhausted and you think, oh, everything is so hard. And it feels the same way, except that much like when your kids are small, you look at them and you see them as the greatest gift in the world. It doesn't matter how hard it is, it doesn't matter how financially draining it is, it doesn't matter because you look at them and your heart is so filled with gratefulness and love. And that's how I feel now. Like I look at her and I see her smile, and I just I think I can't imagine my life any other way except for being here with her for her in any way she needs. And and and that everything else that I was doing is immaterial. Yeah, right. It it is. And um yeah, so that's that's what it means to me. I'm I'm deeply, deeply honored and and appreciative that I get to not only be with her all day long, I mean 24-7, and get to know her as an adult.

SPEAKER_05 44:20

Yeah.

SPEAKER_02 44:21

Um, because a lot of a lot of parents don't get that. They're good kids go away and then they see glimpses and things. But just to be able to just have that 24-7 and really admire her for the person she's becoming and has become is a huge, huge gift for me. I feel sorry for people who don't get to do that, honestly. Even though it's hard. Yeah. Yeah. Right. No, I can get that. And as her mom, I think when she when our kids are young, at least for me, you know, my my kids were young and they're getting ready to go off on their own, you know, there was a lot of rules like don't do this, do this. And I was still, you know, was micromanaging their little lives, right? And then they go away and they become adults. And then with Erin coming back, I had to sort of really step back and just let her be who she had become. She was away from me for, you know, four and a half years in college. And then I had to just let I had to stop. Like I no, I'm not, I'm not, I'm you know, she's an adult, she can make her decisions, do what she wants, to, and so it's been interesting for me to just see, okay, like look at this fantastic person, right? And I'm not telling her how to do anything, she's just doing it on her own, right? Right, right, yeah.

Keeping It Light And Staying Human

Lorri Carey 45:40

So it's fantastic, yeah, it's really cool. Yeah, I get it, I get it. So, how do you manage then keeping the mother-daughter relationship and not just a patient caregiver? Or is it simply just mother-daughter?

SPEAKER_02 46:02

It is okay. Yeah, it is. I just take care of her. I'm just her mom and I and I take care of her. And I think she's if I were to ask her, she'd probably just say the same, same, the same thing, you know, like um, yeah, you're just my mom, and and that's what you're supposed to do, mom. Aren't mom supposed to do that? So yeah, I I I we've never crossed into a patient caregiver uh in so many ways, Lori, and like being a caregiver, I have no idea what I'm doing. I like literally don't. And so I think you know, we laugh a lot about just trying to figure things out. So um it's actually kind of nice to have a little part-time caregiver come in for her because oh, she's just got it all dialed in. Yeah, she knows what to do way more than I do.

Lorri Carey 46:54

That's good. So if there are other families who are newly diagnosed, what is something that you've learned to hold on to every day and that can be helpful?

SPEAKER_02 47:10

Just by saying the word family, I think that's such a powerful way to put it because it's not just the person that gets ALS, the entire family gets it along with that person. You know, it is uh just chain life-changing for everybody. Um, I think that our situation may be different than a lot of people's situation. You know, if you're older, you might have a different um dynamic. But being that I'm the the older one, my daughter's young, uh for our family, including the you know, my son and the people her, maybe her dad, you know, the people that aren't living with us, what we do is just try to keep it light. Yeah, you know, there isn't a a lot of ALS talk. Yeah, there isn't a lot of that, you know. It's not, how are you today, Aaron? It's more like, dude, man, brush your teeth, you're you know what I mean? Like it's it's just just try to keep everything normal light, yeah, light and normal. And I think Aaron appreciates that because she just feels like Aaron, right? Not like the sick person in the room. She knows that she's the sick person in the room, she doesn't need to be reminded of it all the time. So yeah, I think that I think that's probably the one thing you know for us that keeps us motivated to keep living.

Lorri Carey 48:32

Yeah, I love that. I love that. Yeah, I've talked to so many different people and they're like, include us, talk to us, the same thing you don't have. Like don't be afraid.

SPEAKER_02 48:46

Yeah, it's true. And and it's hard for because I've been in that situation. Yeah, I've been in that situation where I've talked to other um people with ALS who are at the point where they're nonverbal. And it's it's difficult to do that when you're not getting any response back. So I understand how people would shy away from that. Like it's easier just to not, right? Just to not include that person. But it's important to people and their um emotional being to feel like they're fully human. And so us who can still be verbal and are able-bodied, I think that we we need to remember that, to give a little bit of ourselves and get a little uncomfortable just to make that other person feel normal.

SPEAKER_05 49:38

Yeah.

SPEAKER_02 49:38

Yeah, just it's it's and I see that in Aaron because she's has greatly diminished her ability to talk, and she talks very little now. And I know she appreciates like my girlfriend came over the other day to cut her hair, and she's like, Oh my god, Aaron, you've got to check this out. You've got to look at this thing I just saw. Like, and she and she's showing error, she ignored me completely. You know, but she comes in and she's just like chatting with Aaron and gossiping with her, and I know Aaron loved it, it just made her feel great.

Lorri Carey 50:11

Yeah, oh perfect. I know that you are proud of Erin for so many things and like just seeing stepping back and seeing the beautiful human that she is. Is there something that you're especially proud of her during this really difficult time?

SPEAKER_02 50:35

Oh gosh. You know, I am proud of her. I am proud, proud of both my children. Um, I think I'm especially proud of Erin because she hasn't changed her way of thinking. Um, she hasn't diminished herself at all. She hasn't been reduced by this disease. Um she's I I think that's what it is. I think that she did not let this disease, which is huge, right, take over who she really is. Yeah, I'm really humbled by that. And I really am so proud of her that she's able to do that.

Lorri Carey 51:12

Yeah. Well, mama, I say, you know, our kids learn from what they see and what they witness. So that is all in testimony to you for sure.

SPEAKER_02 51:30

Thank you, Lily.

Lorri Carey 51:33

Thank you uh for your insights today. I'm really happy that we were able to catch up. With everything that you and Erin are going through together, what are you dying to tell us?

SPEAKER_02 51:50

I am dying to tell you that in the face of the worst thing possible, that you can still thrive. And even though it may seem impossible or highly unlikely, you'll probably surprise yourself.

Lorri Carey 52:08

I think I just told Aaron this. We are stronger than we can even imagine.

SPEAKER_02 52:16

No, for sure. For sure.

Lorri Carey 52:21

Yeah.

SPEAKER_02 52:23

Lori, it was so nice to meet you.

Closing Thoughts And How To Connect

Lorri Carey 52:25

Aw, so great meeting you. And thank you for getting up early and being a part of this. It really made this episode whole and so very special. So thank you, Lily. To my listeners, I hope you enjoyed this episode. And if you want to stay connected, I am pretty much everywhere on social media, Facebook, Twitter, Instagram, LinkedIn, and even TikTok, all at I'm Dying to Tell You podcast. Until next time, know you are loved and not alone. Thanks for listening.

Christian Carey 53:26

Thank you for listening to our mom. Make sure to visit her website at I'm DyingTotellYouPodcast.com, where you'll find photos and show notes about this episode. If you like the show, please subscribe to the podcast and share it with your friend. Thank you.