Ep. 95: The Parable of the Pain Scale | How Bearing Witness to Our Children’s Suffering Calibrates Our Pain Scales to an Entirely Different Level w/ Libby Holley

 

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Summary

We are often asked to rate our pain on a scale of 1-10 for medical professionals. Sometimes for ourselves, other times for our children. And it is often so hard to know what number to give our pain.

In this episode, mom Libby Holley shares how this pain scale can also be used to rate our emotional pain, and the ways it calibrates according to our life experiences. So many of us experience pain on a level we’ve never felt before as we become medical parents. Suddenly, what feels like an 8 for our friend may seem completely trivial—a 2 at best on our own personal pain scale. It can be hard to relate and empathize. Libby offers a perspective shift that allows us to remain connected despite this isolating difference in pain scales.

We also discuss the heartbreaking ways we see this exceptional pain tolerance in our children and how important it is to give our pain the gravity it deserves and to seek help.

little girl smilling
family photo out in a field
little girl sticking out her tongue
mom kissing baby
baby laying on dad
baby leaning against parent shoulder
litt baby in diaper asleep
Episode Transcript

Libby Holley 00:00

I've heard so many times: "I can't imagine what that feels like; I can't imagine what you're going through." And I thought, yes, you can. And it's probably worse than you imagine. And then, at the same time, I've always thought, "You're right. You have no idea. This is beyond your pain scale."

 

Madeline Cheney 00:20

Hey! You're listening to The Rare Life. I'm your host, Madeline Cheney, and today I have for you The Parable of the Pain Scale, with rare mama Libby Holley. So Libby is one of my friends here in Utah, and I honestly don't remember exactly when or where we met. But we've run into each other at various events for families with deaf and hard of hearing children, and events for people with dwarfism, because those are the two diagnoses that our children share. We've also met up for park dates, and I just really appreciate Libby's honesty, and how easy is to talk to her. So several months ago, she sent me a paper she wrote called The Parable of the Pain Scale, and she asked for my feedback on it, and when I read it, I was really excited. I was like, "this would be such a great episode", and we've just kind of been hanging tight until this season rolled around with the theme that it matched. And so I'm really excited to share this with you. I had so many "aha" moments during this conversation, and I just know that you will, too. I'm so excited to hear back from each of you, and to hear your thoughts on this. The concepts are so powerful. In this episode, we talk about the ways that comparing pain with others often isolates us and makes it hard for us to empathize with each other. But if we shift our perspective a bit, we can actually feel more connected than ever with our peers and friends and family that don't understand what we're going through, which is just another way for us to bolster our emotional health, which yeah, is really needed in this realm and flavor of parenting. There are so many ways that we suffer emotionally right alongside our child, and really, that's the reason this podcast exists: to buoy and to comfort, to give solidarity. And you know, who else cares about your well being? Rifton Equipment. Yep, Rifton. They've been around since 1974, when they began by adapting a chair for a neighboring child, and they have been serving people with disabilities ever since. Some of you may be thinking that you've never heard of L M them; well, think again. If you take a closer look at your child's assistive equipment, either at home or at the therapy office, chances are it was created by this awesome company, as is the case for our guest Libby and her daughter Lenin. She said:

 

Libby Holley 03:06

Five days before Lenin turned two, she took her first steps with the help of the Rifton Pacer Gait Trainer. And ever since then, she's had accessibility to the same world as her siblings, as her peers. She continues to use her gait trainer at school, as well as the Compus Chair, and we're so grateful for the gift of accessibility and confidence that it has given her.

 

Madeline Cheney 03:32

Yes, it's obvious that Rifton is dedicated to supporting the needs of our children with disabilities, which we're incredibly grateful for. But they also care deeply about us as parents and caregivers, which is why they are the generous sponsors of this episode. A huge thank you to them for making this important conversation possible. Okay, so a little more about Libby and then we'll dive right in. Libby and her husband Billy live in Syracuse, Utah, with their four children: Will, who is ten; Tatum, who is eight; Logan, who is six; and Lenin, who turns four next month. Lenin has Achondroplasia, which is the most common form of dwarfism, as well as quite a few medical complexities that are not associated with that diagnosis. Libby is a parent educator at Lennon's School for the Deaf a and is a lover of cheeseburgers and family cuddle-puddles. Alright, let's dive in. Hi, Libby. Welcome to the show.

 

Libby Holley 04:43

I thank you for having me.

 

Madeline Cheney 04:45

Yep, I'm really excited to talk about The Parable of the Pain Scale. I loved reading through your thoughts that you sent me. And, I don't know, I just thought this is something that we need as an actual episode. I'm really grateful that you're willing to come on and share your thoughts on that, and, you know, we can kind of dive into it. So if you could just start out by sharing what Tarable of the Pain Scale is, and the first moment that you started conceptualizing this idea.

 

Libby Holley 05:13

Yeah, so this kind of came to me in little bits, and I've pulled it from experiences and different people, and applied them to me and my experience with my medically complex daughter. And about two, maybe three years ago, I had this rolling around in my head, and it became one of these things that I just had to get out, and I had to process, because that's one of the ways I do that; I have to write it down. And it came from watching my daughter be in so much pain, and being asked to rate her pain all the time. So of the pain scale, when you are in a doctor's office, sometimes even just for well check, or in the ER before a surgery, before a lot of medical L M L M L procedures, you're asked to rate your pain, and they'll kind of give you like a one through 10. Or in like a pediatric office, it's usually like a happy face a smiling face, all the way to a face that's crying. And I hated it. I hate it when they asked me because it was really hard to analyze my own pain, but then it also got really hard to try and decipher and analyze Lennon my daughter's pain. And being asked to do this all the time got really hard, and it got really emotionally heavy for me. And then, in the middle of one of our really hard moments, another friend with a child was telling me about something that seemed so insignificant and so small in comparison to what I was dealing with, with Lenin, and I could see how hard it was for her, but I couldn't empathize with her because all I saw was "how can you be talking to me about something so small when I'm going through something so big?" And then something came to me that another friend had told me one time; I have a friend who has an incredible, beautiful little girl, and at the time she was fighting cancer, and with my oldest daughter, something was going on with her; we were doing a lot of testing, public primaries, going to a lot of doctor's appointments, trying to figure this out. I texted her one day and I was like, "Back up to Primary's!" and she was like, "I don't know how you do it!", which we've all heard a million times, and it's just white noise by now. But I said that to her and I even said the words, I don't know why I'm coming to you with this, you're dealing with something so much bigger. And she goes, "This is the hardest thing that you've ever been through, and I know how that feels." And that flipped a switch, that meant so much to me, and I always kind of kept that in the back of my mind. So that's kind of where all of this came to be: my experiences with Lenin, trying to put other people's feelings and give them weight and meaning that they deserve, and then this lesson that my friend taught me; it all kind of wrapped up and came together in this story.

 

Madeline Cheney 08:50

I love how in this paper that you wrote about it, you said that recognizing that someone else's eight may be like your two or three. But you still know what an eight feels like, even if what they're saying would rate so much lower on your scale. And so, like your friend said, "Well, I can empathize with you, because I understand what that's like to go through something that's the hardest that you've ever been through." And I think that is so powerful, because, I don't know what it is, like why we compare, right? Like, that's such a natural tendency, like if someone's talking to about something hard, I feel like we automatically go into that mode of "Okay, how would this feel if I were?" And that's probably really what it is, is that we're trying to empathize, but there is this automatic, "Okay, who has it worse, who has it better?" And, you know, when we do that too much, I feel like that can be toxic to a lot of relationships, especially when, like, your other friend who was complaining to you about something that felt so minimal compared to what you were dealing with.

 

Libby Holley 09:51

Yeah, I mean, you're right. It can be well intentioned, and an attempt to empathize with somebody but as we're looking at it through our lens, and through our experiences, we don't realize that we have kind of calibrated that pain scale to what we've been through, and then we're holding everybody else to that standard. And I think it can go both ways. I think, as we look at other people's experiences, and we kind of put them on our own pain scale, it doesn't match up. Also, when we tell people, as medically complex parents, as we're parenting these children, when we tell them something, it doesn't match on their pain scale. And I've found that so often, those who haven't reached our eight or our ten, they almost don't know what to do M L with it. And so they just kind of say the words, "I can't imagine", which I don't think is true. I just don't think that we always want to imagine what that feels like. That's always been something that I've thought, as I've heard it so many times; "I can't imagine what that feels like, I can't imagine what you're going through", and I thought two thoughts. I thought, "Yes, you can, and it's probably worse than you imagine", and then, at the same time, I've always thought, "You're right, you have no idea. You can't imagine this is beyond your pain scale. You don't know what this feels like." I don't think either of those thoughts are necessarily helpful, but those are definitely two that I have felt as I've tried to plot other people's pain on my pain scale, and when I have given my pain and my experience to someone else, and they don't know what to do with it, if that makes sense.

 

Madeline Cheney 11:47

Yeah, I've definitely felt that. And especially like, when you're in the thick of something really hard, and someone does say like, "Oh, I can't imagine", there is kind of this, "Yeah, you can't." And I think that, I don't know, it is what it is, right? Because it's probably true; these things that we go through with our children and watch them go through, right, which is obviously the worst part, it's something that you don't wish on anyone, right? Like, this is terrible to have to sit here and watch your child go through this. And that's one thing that I also love that you wrote was that there are different types of pain that could be on the pain scale, right? Like, the pain of overwhelm, and the pain of loneliness. So can you share a little bit more about that, like different things that would count as this is not just like just that what we might define as pain when we're looking at the pain scale at a doctor's office. It's so complex,

 

Libby Holley 12:38

It's so complex, and it's as different as every human. Because my pain skill is calibrated to me and what I've been through, and that's included childhood trauma; that's included, isolation and loneliness, and watching my child suffer. And there's pain in being a mom who goes home without her baby, and your arms literally ache to hold your child that you don't have with you because they're in the hospital or they're disconnected from you by distance in some way. There's emotional pain to that, there's physical pain, like you can feel it in your body. And there's pain of fatigue, there's the pain that comes with the unknown, and not being able to predict what's going to happen next, the tiredness and the fatigue of handling your emotions and carrying on with life when you don't want to- there's so much that can be wrapped up in that and that can affect how we feel our pain, how we see our pain, how we see other people's pain.

 

Madeline Cheney 14:02

Yeah, and even like that feeling of being pushed past what your pain scale was previously, right? Like when you do max out You're like, "I'm at 10 or an 11 right now, this is something I've never experienced before, like this level of pain." And even just that feeling, I think, is just, I don't know?And it is something I think that a lot of people can relate with, you know, when you get pushed up to the next level, I guess, and when you're recalibrating, because there's just this feeling of like, I can't do this, and I can't handle this amount of pain. And yet, here we are, we kind of just do, and I guess that's how our pain scale gets calibrated, is that we go M L M through things that were harder than we could have ever imagined. And then suddenly, the things that weren't eight before like, teething, like that's a two or three. They just don't seem as big of a deal anymore.

 

Libby Holley 14:57

That was one of my hang ups as I was having children, and I was being asked these questions. If you rate your pain one to 10, I would always say like, I don't know, a three. Because in my mind, I thought, I don't know if I know what a 10 feels like. And I thought of it as a global 10 like the worst pain any human being could possibly experience. And I didn't realize that that's not what they were asking. They're asking me on my scale of one to 10, the worst pain I have ever been in, how am I feeling. But I never felt like I could be honest, because I was always comparing it to some unknown, of this can't possibly be what a 10 feels like, because I'm sure someone has had it way worse than how I'm feeling now, which isn't helpful. It's going to make the problem worse, if we're not addressing that pain that really feels like an eight to us. But we're assuming that somebody must have it way worse; somebody has lost a child. Somebody is fighting and has more medical cares than I do. Somebody is at the hospital and has had way more appointments than I have; this can't possibly be a 10. This can't possibly be an eight. But it is, it's my eight, it's my six, if that makes any sense.

 

Madeline Cheney 16:21

Yeah. And that's just so profound. It's something that I'm like, "Okay, well, maybe that is obvious to like medical people", but honestly, when you were saying that, I was like, I've always looked at the same way you have, like you did, where this isn't a 10 because there are other people who are in way more pain than I am right now. But what really does matter is that is it our 10? Is it our eight? And I just, I think that's so profound to realize that because I think it validates what we're going through as it is, without having to compare it to other people, like this feels like a seven to me or an eight to me. And like you said, it can lead to us not getting the help that we need. When we are minimizing it to be like "No, it must be a three because other people have it way worse than me", when we are in fact at an eight. And I know that you've also seen that with your daughter where she doesn't exhibit the same reaction to pain and discomfort as your other children do. Probably because of all that she's been through.

 

Libby Holley 17:22

Right. I can think of one time specifically, one of Lenin's diagnosis has led to some severe reconstruction in her diaper area. And because of that she was really susceptible to UTIs and differences when it comes to bathrooms and things. And I have pictures that I look back at now of her just making this grumpy face and we just thought it was so funny. We thought it was like just Lenin's grumpy face, she's so annoyed with us, hahaha isn't that cute. She wouldn't cry, wouldn't disrupt her day and her routine. It wasn't until she kept having these high fevers, one after the other, we would go to the hospital. And one tiny thing on like a virus panel would come back. That really she didn't have a cough, didn't have a runny nose, like I knew in my gut, that's not the issue. But it wasn't until she had a clean respiratory panel that anybody did a urinalysis on her. And we found out that she had these severe infections in her bladder and it was going up to her kidneys. And she just had UTIs that put her in the hospital for weeks. And I L M L thought I have a UTI for like a day and I am on any drug I can find. Like how can my baby go through this and I can't see it. And it's because she's been through so much worse that I think her body is just kind of calibrated that. Yeah, I've got a UTI. Yeah, it hurts. And every time she was making that funny face that we just thought was so cute. She was going to the bathroom and it was hurting her so badly. But she didn't cry. We didn't see those signs of pain in her. And so she didn't get the help that she needed until it was too late, until it was painful and uncomfortable and landed us in the hospital for weeks at a time. And I've seen that in myself as I saw that in Lenin. I noticed and I realized something in myself as I carry my emotional pain differently. I went to a psychiatrist and I got diagnosed with dysthymia I think it's called persistent depressive disorder. And basically it was diagnosed that there was something in my life that happened to me really young. So basically, it's just a depressive personality. And I have just been depressed since I was seven years old. And I didn't know it. I assumed this is how everybody feels. This is how everybody functions. And it wasn't until I got to a ten, which is what you can imagine a ten would be that I realized, oh, I need help. Because nobody could see that in me, because people didn't know I couldn't get up and out of bed, people didn't know that I would sit on the kitchen floor and cry, people didn't know that. Taking care of these beautiful children that I have was the most draining thing.ecause it didn't look any different to anybody else. They didn't recognize those signs. It was just if anybody did, it was like, Oh, it's a rough time. We'll get you through. But it wasn't until I got to that 10. Just like Lenin, it wasn't until we really found out how bad it was. That we realized that there was something that we realized, oh, we have to look at how she feels differently. We have to be on top of things and be proactive. And I found the same in myself, like, Oh, I've got to communicate how I feel to be realistic. Because I realized I got to that global 10. And not just I think this is fine. I think this is like a four or five other people have had it worse. Going back to that when I had my kids. The other question that the nurses asked you is, okay, when do you want us to give you pain meds? When do you want us to intervene? Between one and 10? When do you want us one I was like, I don't know, like an eight, like if it's that bad? Sure. And so that's how I kind of lived my life. It was, I don't think anyone needs to do anything until it's like an eight. And I really can't function. And that wasn't helpful, because I needed a lot of help. Before I got to that eight. And I put it on that global perspective. It was yeah, when I get to an eight, when I stop showering, and stop eating and stop all of these things. I mean, I went past that. But I didn't ask for help until it was way too far. And it's just not helpful. So these sweet nurses said to me, how about we say like a three, we'll put a three on there. When you get to a three, that's when we'll start intervening. And I think that's part of it, we've got to realize that you're going to three or four, it's too much emotional pain for us to carry. Yeah, whatever that medication is to get back to your baseline to get back to your one or your two. If it's taking a walk, if it's talking to a friend, if it's putting on some music and dancing around. If it's so small as sitting and feeling yourself breathe, if it's taking a cold drink of water. When you're at a three when you're at a four, that's enough, we don't need to get all the way to an eight to earn that badge. You don't have to justify and earn our stripes. We don't have to earn that pain to be able to say, look what I've been through, please, someone take this seriously, please, someone find my pain legitimate, because a three and a four on the pain scale, it's legitimate, it's real. And we don't need to hold off until we get to that eight, to get to that nine, to get to that ten, to feel like our pain is real, to feel like we're able to say I need help.

 

Madeline Cheney 24:13

Oh my gosh, I feel so emotional, like, listening to this. I feel like, I don't know what it is, like this natural tendency, I think in a lot of us, to be like how far can I get without getting help? Or without soothing myself in some way? And what the heck with that, right? Like, I feel like it'd be M so cool if we could all just like commit like right now like I don't need to be an eight to seek help or a 10 or even a seven like, I can try to bring myself back to baseline whether that's asking for help or doing something for myself. That brings me back from a four to a one or a two and it's so weird. One example of this is like even with ibuprofen I don't know if you've noticed this, but I feel like there's this tendency to be like, Oh, I have a headache. Oh, you should go take some ibuprofen like that'll make it better and then for the other person to be like no All, I'll wait till it gets worse, right? But like why, you know, unless you have like some really good reason that Ibuprofen is really bad for you and should be last resort. Why is there this tendency to wait till it gets, quote unquote "bad enough" to do what it takes to soothe that pain or to make it better in some way? Or even just to bring it down a couple of notches? Because I think if someone's listening to this, and like, well I'm at a nine right now, how the heck am I going to bring myself back to one or two? And it's like, okay, well, what can you do to bring yourself down to a seven? Or a six? And maybe work down from there?

 

Libby Holley 25:33

Or what help can you ask for so that somebody can get you back down to a seven or a six?

 

Madeline Cheney 25:40

That's a really good point, I think once you get to that high enough number, I don't know if there really is a lot that a person can do personally, without help as well, like, you can be doing things too, but like, when you get to that level of pain, I think we've all felt it, of like, I need help, I cannot do this by myself anymore. And I think there's something to that, like, yeah, we do need help. When we get to that high of a number, or a lower number too, right? There's no number that you have to get to to need help.

 

Libby Holley 26:09

Yeah, as long as you recognize that pain, and you recognize that there is something to be done, and that it doesn't need to be forever, that doesn't need to be where we hang our hat. There's always something that can be done.

 

Madeline Cheney 26:23

Yeah. And like we talked about previously off the hook, but like, I feel like, there's also this fatigue, when you get to a 10, or a nine or eight or whatever, like there's like palpable pain of just stretching and just trying to hold it together. But then like, even, I feel like when you're at like, I don't know, say a five, or even a four, but for a really long time. I think there's also just like this pain of fatigue, of staying in that place for so long, right? Like, okay, things are not as bad as they used to be, or as they are for this person or whatever. And it's not like incredibly painful, but it's very uncomfortable, and I've been here for like three years. And I feel like that can be very soul crushing, right, like just staying in that level for so long, like, that's just so tiring, because you mentioned like, the pain of fatigue, like that is so real, like, I just can't do this anymore.

 

Libby Holley 27:17

Yeah. And I felt that, since my little girl has been born, she's almost four now, and our medical journey with her started when I was 18 weeks pregnant with her, and we have that first big ultrasound. And it's just been painful and fatiguing ever since. And I've said to my husband, like, I am so tired, but it's not like a physical tired, my soul is exhausted. And I keep waiting for that, to just magically go away with some good news from the doctor, I keep waiting to be able to exhale. And then I find it just doesn't go away, because there's going to be something, there's going to be some date that I remember that, oh, this is when we got this news, and that pain comes back for some doctor appointment where we don't get the best news. And it's not just going to go away on its own, I can't just wait for an exhale, I can't wait for my soul to just get the rest that it needs. It's not just going to happen on its own, but it's painful, and it affects every part of your life. You think of when you have a newborn baby and how exhausting that is, and then that's when you get snippy with your husband or you're less than patient with your other kids that you have. That exhaustion affects how you view the world. And that exhaustion from having this weight has affected how I've seen the world and not always for the better. But that pain has changed me; it's a life changing pain.

 

Madeline Cheney 29:10

Yes, I feel that it does change us and I think that there's a lot of talk in like the community of parents of children with disabilities kind of in general "Oh, my child's changed me, I'm such a better person now, I have this new perspective now", and I think that's like so great, and I agree with that. Like I think that they do open our eyes to this whole different perspective right like you see what's important in life and the love you have for them is just something that a lot of times we haven't experienced before, but there is this other side of it. Like you say "It's changed me; I'm a whole different person and in a lot of ways that's really cool, but like in also some other ways like, "This sucks." My brain jumps to worst case scenarios a lot easier and like and in so many ways, I think we break alongside our children, like when these things happen, we break and sometimes even shatter, like, depending on what's happening. And as we rebuild ourselves, I think there are some ways that, you know, we have this depth to ourselves that is really cool, but like, we also were broken, right, and I don't know that we will completely heal from that. And, yeah, I think that's so important to acknowledge, because, as we are like, "Yay, our kids!" or whatever, like the happy side of that, as we talk about that, if we talk about that incessantly, and we don't talk about the other parts of it, like, "And I'm also screwed over, like, I am not the person I was, I lost this innocence. And I kind of missed that some parts of that person that I used to be," I think, if we don't talk about that, and the people who are at that eight, or nine or 10, are gonna sit there and be like, "Well, I must be messed up in a whole, because I can't just sit here and talk about all the rainbows and sunshine that having a child's medical complexities is", right? Anyway, I love that you acknowledge that.

 

Libby Holley 30:53

Well, and both are true, and both are equally as life changing. But I don't think one gets us any closer to empathy than the other. I feel like when we look at these great things that our children have brought us it is so true, and it is so real, and so palpable. And so is the pain. And I don't believe everything happens for a reason. I really don't like that idea. But I do think that we can give meaning to our experiences. And we can give meaning to anything. And so to go L M L through all this pain to be able to sit there and hold my baby while she is writhing in pain, and just thinking "I would do anything, and bargaining, and pleading, like please let me feel this so she doesn't have to", that's something that I can use, that's something that I can keep and take with me so that when someone in my life is going through something, I can look at that not on my scale, and say, "That's a two, I've felt a 10". But to say "Oh my gosh, this probably feels to them, how not being able to hold Lenin felt to me", I know how that feels, I can sit with them. And I can feel that with them. And I can walk through that with them. The pain can be a gift, if we let it be, it can be a gift of empathy, it can be a gift of connection, because this life can feel so isolating. It's only further isolating to think you don't know how I feel, because they might not have felt to the full extent how you feel. But maybe they know what an eight feels like to them. And you can tell them, this is an eight to me. And maybe their eight is something that feels inconsequential to you. But if we can sit with each other, and understand, "Hey, you know one of the worst things you've ever been through? This is how that feels to me." And we can give each other that gift and give each other that grace and give each other that empathy. It's going to make this not so isolating. And it's going to make all of this have meaning in a world that feels so meaningless at times.

 

Madeline Cheney 33:41

Yeah, I really, really love that. I felt that too. And I'm sure so many people listening have felt that like, kind of this newfound, like, seeing someone else in pain, and even if it's a completely different topic of pain, right? Like, "Oh, someone's going through IVF right now, and I have no idea what that's like", or whatever. But like, when you see that level of pain, you're like, "Oh, I've been there." And even if, like you say, it's a completely different thing, or similar, I don't know, but like, not the same thing we've gone through, we can still look at that and feel those feelings with them and be like, "Yeah, this sucks, and I can I don't know exactly what you are going through, but I do know that this hurts and I know what it's like to hurt." And I love how you said that. Like it really does add a meaning to this pain that could otherwise seem meaningless.

 

Libby Holley 34:24

Yeah, and I think the causes of our pain are as individual as we are, but the effects that they have on our soul, the effects that they have on our body, are the same, and they don't discriminate. That pain causes those same feelings in them as it would in me. And so seeing that and kind of taking away the cause of the pain and just looking at "What is this doing to them?" and being able to recognize it, like you said, being able to recognize that in myself. I have had those days where I just want to sit in bed all day; I've had those days where I'm just so grumpy because of something happening in my life. That's what we all really need. We don't need to be judged on what is causing our pain, but we need to be comforted and loved and recognized for what that pain has done to us.

 

Madeline Cheney 35:28

Yeah, I think also like on the flip side of this, like when you are with your friend, when her daughter had cancer, and you were talking to her, and she validated you, even though you fully acknowledged what you're going through is so much harder, I do think it feels really good to be M L M on that other end of it; to be validated, knowing that what they've gone through is on a different level, like you're calibrated very differently than I am, but this really hurts. And, at the same time, I think we also need to acknowledge that, like, we're not always in a place where we can be that person. Maybe people should think twice about like, "Hey, what is she going through right now? Is she in a place where she can receive this? Like, is this something we can bond over, and she can offer that empathy?" Or, "Oh, man, her child's in-patient right now, things are really hard, they're not sure she's gonna make it, I shouldn't come to her and talk about how sad I am, because I'm remembering the NICU date that my child was discharged, and it's bringing back memories, like, this probably isn't the best time." And so, I think, for us to be able to recognize that, or at least, I mean, take a guess, right? Because we're never going to know for sure. But then also, if someone comes to us, and we're just like, I can't handle this right now, like, I can't comfort you about this thing that feels so small, because I'm dealing with something so all-consuming right now, and I just can't get to that place where I can empathize with you and be kind of, like I don't, because I feel like that takes a conscious effort. It's okay for us to be like, "You know what, I'm not the right person to vent to right now. I'm just not, I'm not gonna be able to give you what you need right now." Because I feel like that's kind of a boundary we can also have, when you're in a high level of pain, like, it's hard. And I feel like things, little things like that, like you say, like when you're just that fatigue, and little things make you snip, like, little things can push you into a higher level of pain, when, you know, you're reminded, like, "Man, other people are going through something so much smaller than me." So anyway, it's also important to protect ourselves if we need to, and if we're not in a good space to be able to empathize.

 

Libby Holley 37:28

It all comes back to not being disingenuous about your pain, and to not try to mask it for somebody else's comfort, and to be able to recognize it in yourself, and be able to do what it takes to help it and maybe that is saying, "Hey, I'm right here, and I will listen and sit and hold space with you when I can, but my pain is consuming me right now. I love you, but I can't right now." And that's taking care of yourself. It's not selfish. It's not unkind or mean-spirited. But to think that we can take on somebody else's pain when we're going through so much ourselves, either in the name of not coming across as selfish, or to kind of mask that pain, "Oh, I'm fine, look, you can come. Of course, you can tell me, of course." It's not helpful, and it's not going to do anybody any good. It's going to build resentment. And it's going to only tear our bodies down even farther and harder when we're trying to deal with this pain we've been given. I think being real, and really thinking about how we are feeling, is so important, and it's going to make all the difference if we can be honest about it with each other.

 

Madeline Cheney 39:01

Yeah. Like you say, being really genuine, and really real with ourselves, because if you're sitting there saying, "I'm a two right now, because someone in the world had a 10, and this isn't that," then you're not going to be as likely to be able to draw those boundaries or do what you need to to bring yourself back down. But if you are real with yourself, and you realize, "Actually, this is a very individual pain scale, if I feel like I'm at an eight, I'm at an eight", then we can take that seriously and get the help that we need. Or tell the friend that we're not in a place to listen to that kind of thing right now. And, like you say, I think that's the key is being really real L M with ourselves. Because if you're telling everyone you're a two, you're not going to get the help you need either from within or without, and we need to take our eights, and our sixes, and our sevens, and our tens, or whatever; we need to take it seriously.

 

Libby Holley 39:54

Because you're gonna say, "Oh, I'm fine." You're gonna say you're at a two and people are gonna think "Oh, that's just a two for her", and it's not; and they're going to miss those signs, just like I missed those signs of Lenin until it was too late. If we can't be genuine with ourselves, and we can't be genuine with other people, they're going to miss when you need help, until it's potentially too late. And I don't want anybody to feel that way; I don't want anybody to feel like their pain is not valid, because I felt that before, and it's an isolating and horrible place to be, and it didn't serve me or anybody else the way that I thought it would. I thought, "Taking on this pain and not sharing it, I don't need to bother anybody with how I'm feeling. Nobody else needs to feel how heavy I feel right now." And I feel like if I share it, I'm going to bring them right down with me. And so I wasn't honest about how I felt. And it didn't help.

 

Madeline Cheney 41:00

If you think of it from the perspective, too, of like, watching Lenin, and how badly you would have wanted to know; that broke your heart to know that she was going through all that and didn't tell you. And so, I think if we think of that, too, with like our family and friends, or you know, just anyone around us, like, they care about us, and they don't want us to silently suffer, and they don't want us to stay at an eight and act like we're totally fine. If you think of it from that perspective. And I know, it's like a natural tendency to be like, "I don't want to burden anyone with this, or they're gonna judge me and think that I'm weak, or this is just too heavy for them." For the most part, those that are around us love us, and they want to support us, and they want us to call out for help when we need it. And it's hard. But we need to. Also, I wanted to say how cool it is to meet other people that have a similar pain scales as you and seeing like similar life experience, so like meeting other parents, is just so cool to be like, "They've got it. Like, they know." You don't have to translate the pain, because they can just be like, "Oh, I've been there."

 

Libby Holley 42:02

Right, because we have so few sources of validation, because not very many people have been through what we've been through, and so to get that validation of something that feels so personal, like the pain that is associated with your child? Oh, to feel validated in that way... it's so important. It's kind of what sparks that instant connection, like, "Oh, you get it."

 

Madeline Cheney 42:30

Yeah, totally. I would love to wrap up with what you would like to say to a new parent, so like, maybe what you wish you would have heard, as, you know, you were at your 18 week ultrasound and you were beginning this journey of four years of this fatigue and kind of going L M L M through this pain and recalibrating your pain scale. What do you wish you could have heard about the pain scale, and that you would like to tell maybe newer parents just starting out?

 

Libby Holley 43:00

That I don't have anything to prove. That I don't have to make other people feel comfortable, and to hide my pain so that I don't hurt someone else. To be told that I believe that you're in pain, I don't think you're being dramatic, I don't think you're being weak. I felt like I had to be so strong for everyone around me, when all I wanted to do was just... fall apart. And to make sure that I find people to fall apart to, because that has been as helpful as anything else I've been through, as anything else I've done to help with my pain.

 

Madeline Cheney 44:01

I really, really liked that, like the license to fall apart. And to let down your guard and let down that strong face that you're putting on for everyone. Well, thank you so much, Libby. I'm so excited about this conversation that we had. I feel like it's so needed and I know it's gonna touch so many people, and I'm just so grateful that you came on to share it. Thank you so much. For adorable photos of Libby and her family, head to the website therarelifepodcast.com You can also give Libby a follow on Instagram at growing_with_lenin, and there are links in the show notes to follow both her and me there on Instagram. Join me next week for a solo episode all about the obsession our society has with having a quote unquote, "healthy baby", and how hurtful that can be to those of us who love, very much, our unhealthy babies. Don't miss it! See you then.

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Ep. 111: Season 7 Kickoff lake and snowy mountain https://d3ctxlq1ktw2nl.cloudfront.net/staging/2023-0-26/309450441-22050-1-63bc800d4419a.m4a

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68: Dipping My Toes into Educational Advocacy

 

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