S2 E12: Handling the Grief of Chronic Illness with Julia Pearce

Stacy Griffin:  Welcome back to Autoimmune Adventures. We're so glad that you are here with us today. Whether you're walking through a diagnosis, wrestling with grief, or rebuilding after everything's changed, this space is for you.

Alysia Thomas:  Today we're going to be discussing something that touches all of us on our journey and that is grief. Not just the kind that comes with losing a person, but the kind of grief that is layered grief that comes with a diagnosis and/or a disability. The constant reinvention of your life that chronic illness demands of you.

Stacy Griffin:  And we are beyond honored to welcome someone who brings deep wisdom and compassion to this space. Julia Pearce is a certified grief educator, a disability advocate. She lives with multiple chronic illnesses herself and she's made it her life's work to help people live with courage, compassion, and connection even in the face of change.

Alysia Thomas:  She blends her personal experience with professional training in trauma and grief and her writing and work have been a gift to many. Julia, thank you so much for being here with us today.

Julia Pearce:  What a joy it is. Thank you for having me. I appreciate you.

Stacy Griffin:  To get us started today, we're going to ask this question. Julia, can you tell us a little bit about your journey personally and professionally and what brought you to this work?

Julia Pearce: So, personally I love starting there. Uh I began many years ago. I say that I'm in my third act of life. My first act is when I was this carefree young human who just lived, right? lived, climbed trees, was this adventurous um, non-fearing little human who thought I knew where I was going and what I was going to do next. And that makes me um have even more smile lines because what a world that was. And uh I went for it. I went for it in that first act of life. And then my second act is where I became a mom. And I after meeting my wonderful husband, and we lived really big. We um just met the wind and flew kites and saw the the grandness of the world. And then um life changed for all of us as our son who was this adventurous spirit of his own came into an unknown illness. And with that illness and him surviving it, surprisingly um, my life also changed.

And that's where things came into this second act of of everything turning on its head and learning a thousand new ways of going about because with the survival of his illness, we then began to survive differently in our world. And I wonder at times how we did that except for it was one minute at a time and then with joy and audacious, audaciousness and all the things. So what came next in my personal life is learning how to be even more resilient and tenacious and going forward with joy with our son.

But a few years after he survived, I started getting some some pretty intense health changes for myself. I was a runner for most of my life and my running changed, and I was getting some pretty intense pains and I started wondering if it was because I was running too hard or if I wasn't just sleeping enough. And those things came alongside with continued mystery for him. And then I was having such intensity of pain that I started to seek some more um insights from the medical world. And that went on for a few years of trying to figure things out for myself. So, in my personal world, I became this learner and I tried to maximize things that were coming to me as things kept tumbling along.

I worked for a school district for 19 years and then um went over and worked and am now working for a state agency with in the realm of disability. So all of these things are tumbling along and my body is reacting and acting differently and I still begin to wonder and um roll along with it while our world keeps tumbling like I'm being polished. Where it took me next was somewhat fascinating and like made my head tilt and my eyes squint sometimes.

Alysia Thomas: So, what inspired you to become a certified grief counselor and or educator and and help advocate for people that are living with chronic illness and medical challenges?

Julia Pearce: Yeah. So that came many years later. So our son when he survived his original illness, he did eventually pass away from those illnesses and his disabilities. He did survive and come up. He was like this wonderful daisy that just kept popping up through the snow. And we thought, my word, we're going to do this. And then things changed again and again and again. when he did finally um pass away, he,it was shocking to us even though we saw what was coming. And that shock was surprising to us. And so I needed to learn more about what this next type, this next level, this next wave of grief was. And I couldn't find a space for it.

So I continued taking on this value of what I had learned through all of my years which was to become a learner, and I learned more about grief and then became that grief educator, so I could help what I couldn't find for myself, and I was fascinated because I was not the first person who experienced child loss and yet here I was searching for a space where I could say things out loud like, "Why do I miss the oxygen concentrator?" after he passed away, and how is it that I am still yearning for doctor's appointments with him like, what is that? And I needed a space so I created it by becoming a grief educator and I now support and by saying support, I show up and I listen and people get to say the words that sometimes you can't say out in a regular community of people saying things. People look at you and go, "I have no idea why you're saying that to me. Uh, aren't you done with the casserole?" And casseroles are those things that we bring to families after a loved one has passed away. And it's wonderful and warms our soul and our bellies. And then there's more to grief.

Alysia Thomas:  Yeah, that's very true. I think that it's interesting because um you you are creating this space. I people don't like to talk about grief.

Julia Pearce:  No.

Alysia Thomas:   It's really difficult to talk about.  But there are a lot of people that that is how they get to healing is by talking and sometimes just having somebody with a listening ear um is the best thing that you could offer to them. So I love that. I think that's very inspiring story.

Stacy Griffin:  Um, I am really wrapped up in what you just said, Julia, because it for me it has been a huge portion of what I've dealt with. Um, our audience knows because I've shared this that I've had eight miscarriages and have never had a child and that my motherhood has happened through foster care and other things of that nature. So, it's hard to talk about grief when you don't, when you never had anyone, right? But it doesn't change the fact that the grief is very real and it does make people uncomfortable. It it makes them very uncomfortable. So what you do is so important. Making a space for people to talk and to experience their to like walk through their grief with other people who are going to respect their pain.  That that is beautiful.

Alysia Thomas:  It is.

Julia Pearce:  Well, and if I can add to what we're speaking about because people think it's one thing and grief is what we don't see as well. So there's people in our in our communities that we don't understand. And there's a type of grief, it's called ambiguous. And it's what you can't see. And ambiguous grief is one of the most unknown.

Julia Pearce:  And grief, like you say, is unknown. We don't speak about in our communities that beautiful casserole. And then the casserole dish is clean and we think we're done, and when you just shared with me, and your listeners as well of eight loveliness of space and hard moments, we don't remember, that, that is realness and, thank you for sharing that because that's what we don't see within one another.  

I had somebody tell me yesterday that their daughter had had a miscarriage and then they just went on quickly and I said I am going to pause with you now and they said, "Oh we get to pause?" They said that and I said, "Oh can we pause? I am so gonna sit here with you for just two seconds,"and the whole space of them just sat in that. So I this ambitiousness of what we don't see with grief is anything we've lost that we did not choose. And we, and we don't choose these things. We did not choose for our son to go through an illness and survive. We're grateful for the survival, but we lost the 2-year-old that was there. So, grief comes and we mourn. And sometimes the warm belly helps. But sometimes you don't get a warm belly and that's hard.

Stacy Griffin:  That's true. They don't bring you casseroles for miscarriages.

Julia Pearce:  No, they don't, or for lost dreams or for what this child would have been, should have been. What if I had been? And that's all grief. It's all of it. Yeah.

Stacy Griffin:  And chronic illness is grief.

Julia Pearce:  Yes, it is.

Stacy Griffin:  I don't think a lot of people consider that either. We, we grieve so much when we are diagnosed with something that we know is a life sentence of change. And it, it's a lot. It's a lot.

Alysia Thomas:  Um, what would you say in your time working that you have seen people do to honor their grief while they are still trying to show up in life? Like still trying to be that resilient person they need to be to continue on but still honor their grief. I think that's a hard thing for people to do and and we were talking about this on our last recording that joy and pain can exist in the same space

Julia Pearce:  Mhm.

Alysia Thomas:  ....and that's a hard concept for us to grasp sometimes. We can be grieving and we can still find joy in that same space. Um, so what have you seen people do to honor their grief while they're trying to find joy as well?

Julia Pearce:  So our son passed away 12 years ago and in the first couple of years I thought I had to find it right away. That's what community, that's what culture, that's what this part of the world has said to do. And I thought, oh, bounce. Just bounce. Um, that's what we needed to do as our son was in the hospital. I needed to respond quickly and go into survival mode. We were trying to keep him alive, and we did by the way with nothing we did. It was pure uh happen stance mostly. He survived. We waited and he survived, but we were in survival mode and I thought that's what I needed to do after he passed away. So, I did it. I went back to work too quickly. I um engaged with people too quickly. I thought, "Okay, now I'm going to..." and I didn't pause long enough because I didn't know what to do. And so, I went back to do the things that I thought I knew what I was doing. So, it's in those moments that I actually just needed to pause that things came that things came to me. Um, I think that's what that's what we're supposed to do. I think and we don't do it very well. We don't. 

Alysia Thomas:  Oh, we, no, it's hard. It's hard. It's not fun to feel the all the feelings. It's not fun. But it is important.

Julia Pearce:  Yeah.

Alysia Thomas:  It is important. And And I don't think people talk about that enough. Um...

Julia Pearce:  No.

Alysia Thomas:  I, I that's something I had to learn through,through my chronic illness diagnosis is to to let yourself let yourself grieve. Like you said, pause.

Julia Pearce:  Mhm.

Alysia Thomas:  Like why do we feel like we have to just keep pushing all the whole time and just, you know, just put your head down and push, just go, you know, pull yourself up by the bootstraps. And it's it's really not a very compassionate uh, way to handle grief.

Julia Pearce: Right.

Alysia Thomas: Um, you you can allow for I mean I there's a place for it. I believe there's a place for it um to for pushing forward and, and you know pulling yourself up by the bootstraps, but there's there's also a place for sitting in your feelings, allowing yourself to feel what you need to feel. Grief is messy. I mean it's messy. So I, I love I love that. I think that that is an underrated piece of advice. Just pause and sit with it. Don't jump back into things so quickly that I mean take time to mourn. Take time.

Julia Pearce:  Yeah. And I I think there's also value in knowing who you can do that with. So when you say pull yourself up by your bootstrap, somebody actually said that to me and they said it to me as our son was needing to use a wheelchair for his mobility. So he had a degenerative illness near the end of his life and I was going to pick him up from school and he needed help walking um out of school and somebody said, "Julia, pull yourself up by your bootstraps. just do this." And I said, "Okay." And I then knew who not to go to ever again.

Julia Pearce:  And it also happened after my own diagnosis, I needed to rest and I needed to have strength for one thing, and that was caring for our son. It wasn't for going out. It wasn't for attending parties. It wasn't for going to social events in my um community. It was for caring for him. So if that meant I took a rest while we watched a movie, then yes, I was going to do that. And people were saying, "Oh, so you took a rest today, huh?" With that little, "Well, what else did you do?" And I was like, "I took a rest while we watched a movie." I had one goal in mind, and that was to do what he needed. But there was always this nudge to, "well can't you just, why don't you," and it was no I'm going to take do this. What if we were nice to each other and nice to our own self? That's also grief.  That's also wishing we could do more and then realizing I am doing more. I am.

Stacy Griffin: I think that that is a real struggle whether you're deal I anything that causes grief causes a struggle within us because the world has this expectation or friends have this expectation but when you have someone you've lost they can't understand and the same thing is true with chronic illness if they don't have a chronic illness, illness. They can't understand the need that we have to take a break, to pause. That our pause is not us being lazy. It's us providing a space for survival. They just may not understand that. And so medical trauma is it can be many things, but I think that chronic illness is its own kind of medical trauma. So my question to you is this. If that be the case, then we feel like something from our life has been stolen. What do you tell someone in that space of dealing with a new diagnosis or dealing with what this now means for them?  

 Julia Pearce:  That's a really big question, right? I actually sat in a room with a young um, a young adult who had received a new diagnosis and they said, "Hey, you've been through this. will you come talk to them? And there were a couple of us who had been living with a few things, things, right or things. And and we said, "Sure, you know, we're open. We can do this." And we came in and like we would answer any question. And this young adult was already deciding, "This is what I'm going to do. I'm just going to keep grinding. I'm going to go into it. And if, when people are open to hearing things, then what I would say is listen to what your body needs. Rest, allow, choose one goal because doctors are fabulous and they practice medicine. And once in a while, you'll receive a list of things. do this and this and this and this and try this, and take this, and then add this, and you might hear you're deficient in this, and this, and this, and you walk away going I now have to do 10 new things and I'm not able to sit up some days.  

Julia Pearce:  So what I would say is feel your body and do one of them and then go back when they say how is this going and you say you know I looked at that and I saw my day and I chose this one thing to focus on and I did it really well this is how we're going to direct it because we don't become advocates for ourself until we let people in our teams know this is how it works and nobody tells us how to do that. No one tells us how to become advocates for ourself. I could do that for my son in a blink from day one in his medical and then it took me what a decade before I could do that for myself. That made no sense. I was living in Dr. Seuss land. I was nonsensical. That's what I would tell someone.

Alysia Thomas:  That's solid advice. Solid advice. We, We've talked very much about what you just said.  We've talked about that on other episodes. And um, self- advocacy is our big push. That's what that's why we are doing this because um, especially with women we are taught to be selfless. We are taught to think of others, all at at all times and um we push our needs down. We learn to ignore what our body is telling us and it leads to some problems, right? It leads to problems and then here we are, and with all these issues and we're used to just I mean we just think the doctor's going to tell us what to do, and we do that and it's just not that simple.

Julia Pearce:  Mhm.

Alysia Thomas:  Like you said, we're the director. Nobody's going to come and save you. The doctor doesn't live in your body day-to-day. The doctor doesn't know what you're living with day-to-day or how you're feeling that particular day. This is your body. You are the only one who can interpret what's happening to it.  

You know, you have to learn to listen to your body. You have to learn to develop that sense of intuition for what is needed and when to stop and when to go and when to add something and when to take something away. And it's, it's a, there's a learning curve, right? It's a learning curve. You think, "Oh, it's my own body. I'll figure it out." It takes years. It does. And you have to have some compassion for yourself while you learn that. I think so. You you kind of ended on that high note of uh and I want to move on to talk about resilience and joy. So, what does that look like for you and how can people begin to cultivate that while they're in the midst of the really hard stuff?

Julia Pearce:  So, this causes people to rampage and to just bloom with fury sometimes. And I love it because uh it's gnarly. Nobody likes being resilient. It means you've had a boulder come down in front of you.

Julia Pearce:  Nobody likes being resilient. It means you've had gnarly hard like gross stuff happening. You don't become resilient just by sitting on a beach eating a joyful icy. This is not easy stuff. And to have resilience come to you and to find joy seems so counterintuitive. So the way I saw this happening is when our son was in the hospital. I know it keeps coming back to him. What was the deal with this grand teacher in my life? He was like the top of the mountain where you go to the top and you're seeking clarity and you go to the guru. He was our guru of all the blessedness. He that was him. And so he was in the hospital and they didn't know if he was going to live through that initial illness. And the really great medical team walked around his crib. He was tiny. He was two. And he had lost all of his skills. This massive illness came to him. It was catastrophic. It took everything from him. They couldn't figure out what was going on. And they said, "We don't know if he's going to survive." doctors and their just truth-telling and and so we said, "What is going on here?"

The next day he stood up, climbed out of the crib, and the nurses, I love 'em, they got him an IV pole, put his IV bag onto an IV pole, and he staggered with his atexia. That which means he couldn't walk straight. It's a neurological condition. and he just went bopping down the hall, smacking into walls because he was like, "I'm going. I don't know what is happening here, but I'm going." That is resilience. He could not sit up or hold his head up, swallow. All of his language was gone.  

He couldn't hold his hands up. And then he climbed out of the crib. That is resilience. It is also coming after the hardest thing I have ever watched. That is it. How did he do it? We have no idea. We have no idea. How do you become resilient? You get up after the boulder falls on you. You climb up out underneath it.

All of these images of finding the resilience after and during the hardest thing because while the rest of that story with our son sounds lovely, he was there for many days and it wasn't easy. He had many many many things coming to him including thousands of seizures and he didn't walk well after that. It wasn't like he was just as the doctors was hope, were hoping that everything would come back 100%. No, he had a lifetime of disabilities and continued illness and yet he always bounced. He would be in the middle of an illness that lasted four months in later parts of his life and he would pop up and be like, "Let's go to the store and get balloons." Yes. I would be exhausted and look like I had been dragged through a puddle and we would show up at the balloon store to get a balloon while resting in the aisle cuz he was so fatigued.  

Julia Pearce:  We're getting a balloon. That is it. How do we do it now? I pull back to those memories. How did he do that? I have no idea. He was a non-speaking individual with complex multiaceted disabilities. And I sit in wonderment. So maybe we sit in wonderment of what is happening to us and say, "hm, I have no idea what to do. I'm going to pause."

There's also a saying from Mr. Rogers that says, "Wait." And it stands for "why am I talking?" But we talk internally. It's this internal dialogue. Why am I talking? just pause, be still, hold on. And I think that's part of the resilient joy that I seek, that I speak about, that I go forward with. Just stop. Like I tell my brain, stop. I think that's part of it. And none of us like it. It's not easy. It's not supposed to be.  Keep going. That's what I've learned through um many many years.

Stacy Griffin:  Thank you for sharing that. That was actually I think you've beautifully covered the question I was going to ask which was how do we sit in grief and joy at the same time and how do we make that a daily practice and I think that you covered that beautifully because we learn to wait. We learn to be silent. We learn to not have to do something for a minute so we can work through it in our mind. the need to have that neurological connection and spiritual connection with those different facets of ourselves so that we can dwell in that space because it it does collide. They don't seem like something that could take up the same space. I even remember a story that was told to me years ago about how fear and faith cannot hold the same space. I don't believe that because I've lived too many times where fear was a very real thing. But that belief that that love that I felt could help me dwell and deal in that fear, because I couldn't control it. So I had to find some way to cope. And I think our systems have that coping mechanism, but only if we slow down. only if we find that space and sit in it.

Julia Pearce:  It's very complex and it takes a lot of practice. So my I have a daily practice actually for it and I do things every day that help me look for ways to become aware and to pay attention to things. And part of it is looking up. I pay attention to the clouds. I pay attention to the mountains around me. I pay attention to the birds singing outside of my window. I also have a daily um, uh meditation, but my meditation is walking. I, I do it as I'm walking down a hallway. I do it as I'm walking in my backyard checking for my garden. I do it as I'm looking at the books on my wall and the art that's in front of me right now.  

Julia Pearce:  I have art in front of me very purposefully. I put art in front of me. And so I think it's, I, I have a visualization when I'm in meetings and my work now knows this and so like it's like the gig is up but I I visualize like I am the boulder in the midst of this stream and so things can be swirling around me and I am still in place. So people now ask me, are you the boulder today? And I'm like yes I am. I am is the river higher sometimes. Yeah. Yeah. Sometimes it's up to my shoulders and I am still here. That is part of what I do. And it's taken a long time. This did not happen in one week. It h it started a long long time ago for me.

Alysia Thomas:  I'm glad that you brought up meditation uh because I feel like that is I mean we, we also preach meditation. It is there are so many so many benefits that come from it. Um, but as you mentioned, sometimes we don't know what to do, and all, this all, this it's all swirling around us and we don't know what to do.

Julia Pearce:  Yeah.

Alysia Thomas:  I feel like th, those moments for me are the most important times to pause and meditate because that is when I h, I receive insight on what to do next. And sometimes that is you need to keep sitting and just waiting and sometimes that is you need to do this or you need to do that.

Stacy Griffin:  So, chronic illness obviously brings wave after wave of change. And my question to you is this. What would you say to someone who's exhausted from having to constantly adapt to a new normal? Because as the disease progresses, more things change. Maybe there's more loss. Sometimes if we're lucky, we get back a little bit of something, but then we might lose it again. So there's this constant change. How do you help someone with that?

Julia Pearce:  Constant change is exhausting and it's almost waiting for what's called anticipatory grief. So, you're waiting for it. you're anticipating that the next thing is always going to come. So, it's something I actually in our house we call it waiting for the shoe to drop. And in our spaces, in my life, it has always come with more intensity.

Julia Pearce:  It's never come like a good change. Oh, that was nice. That was nice. So, when my personal diagnosis have come along, it went from um so fibromyalgia is one of the things that I have in my world. And at one point, the only safe space that did not hurt on me was my left elbow. So, um, that was a safe space for my husband to be like, "Okay, left elbow." And that was like the spot, right? Everything else I had like compression on. I was wearing braces. I was uh, you know, cold all the time. I was bundled. So, left elbow. So, the next things that came in changing was always waiting for that shoe to drop. it was and then what was going to happen next to a family member what was going to happen to this and that's the difficulty, and also how do I get stronger to wait for that change and stronger does not mean physical, because when I had one spot on my body that didn't hurt I was not getting stronger physically, I was maintaining my mental health that meditation my daily um practices.  

I was resting a lot. I was becoming who my son needed to have me become, and I was paying attention to it, so I could be ready for my next own health changes, but also his health changes. And so what are, how do we do with change? I've become a seeker of how I get stronger in paying attention, becoming aware of what I can do and then trusting that I can do this because I have not only done it in physical, emotional, spiritual wellness and all the things. And I personally am kind of tired of change and which I know every time I say that I should be finding a doorway and knocking on wood because I have just jinxed myself by saying I'm tired of change. It's coming.

Alysia Thomas:  By speaking it out loud. Yeah. You know, but what I hear you saying and I really appreciate is that in order to handle that and and navigate the unknown that is coming at you with living in medical um complexity land, you know, not knowing what coming what's coming next is you prepare yourself to not know what's coming next.

Julia Pearce:  Yeah.

Alysia Thomas:  That's how you deal with it, right? You know something is coming. You don't know when. You don't know what it's going to be, but you say, "Okay, these are the things I have control over. I'm going to educate myself. I'm going to practice all the things I practice to take care of my body." And I can learn something from that because it's funny because when you mentioned cold, I was and you're talking the whole time. I'm like, "Oh, this is You talked about anticip, anticipatory grief." I have anticipatory grief every year when I know winter's coming.

Julia Pearce:  Yeah. So do I.

Alysia Thomas:  I,I mean, I grew up in Moab. It's a warm, hot place, and I live in a very cold place where it's winter half the year. And it's not easy. It's not easy living here for me. Um, and so I, I've gotten better over the years to anticipate that. You know, I know that that change is coming and I can anticipate that and prepare for it. But with medical issues, you don't you don't always know. You don't always know what's going to send you into a flare. You don't always know when some new symptoms are going to show up out of nowhere. You don't know when you're going to have a good day. You don't know when you're going to have the energy to do this thing you've been wanting to do. Um, so I, I, I like that you, I like that you, It sounds to me like it was like a mindset. It's a mindset shift, right?

You just have to say, "Okay, I know it's coming. I don't know what it is that's coming, but I know something's coming. I'm going to be ready for it.

Julia Pearce:  And it's a big, that was a big shift for me as I was first in this realm of not only being ready for what came next with our son, but I was also seeking joy in not what was happening with him, but what he brought to his essence and what I could still do. So if I was exhausted at the end of a day, we could still laugh. And while he was at end of life, he was still teaching me. Mom, come on. Mom.  And I was like, okay, seriously, he's the one teaching me. That was embarrassing. And also so extraordinary. So what is it that it has taught a thousand things and I will learn it differently every single time. Learn it and learned it. He's still present and I am still reaching. That's it. That's it.

Stacy Griffin:  I love that so much. Um, I think that we have to within our grief find a sense of not just acceptance, but we have to embrace a sense of worthiness, that we are worthy of joy, that we really are worthy. And and that's something that I don't think a lot of people realize. When you're in grief, you can search for beautiful things. There are always flowers in the snow. There always are. You just have to be willing to look for them,

So, we talk a lot about worthiness on our podcast. Um, can you speak to the connection between disability, dignity, and self-worth because I think there's a lot that could be said there.

Julia Pearce:  So this one makes me breathe super intensely uh because not everybody feels like disability is worthy, right? We dis-value disability. It's really important for us to know that there is worth of an individual because they're here. We don't have to do anything more than to be like that's it.

Julia Pearce:  And so having that awareness, we don't have to do more because, because and having that awareness with um identity of a disabled person or having that awareness because we are tired with a diagnosis in the medical realm or as like our son had multiple disabilities starting with his original illness. Whatever it is, you are who you are and we shouldn't have to say and I do this and I bring value because of this. And I think that's another realm of self- advocacy and being an advocate that we can have alongside of folks. And I watched this happen with um within our son. And I went within his stride. He led us from the moment he stood up again in his crib, from the moment he survived. And it was so easy to do it with him because he had it in his, breath in, breath out, which is a technique in breathing breathe in breathe out of finding our calm. So part of what that can kind of look like is um doing it and I say that with such audacity and people are going to be like but tell me it's showing up and saying this is how it looks like for me. This is what it can become and why it's important for me. Not because I'm trying to tell you it's important for me to exist, but because what this is important for me or a person who I'm alongside or finding a reason for them to have an autonomous space, meaning control, and to be determined for their own selves.  

That's called self-determination. I like to be self-determined and so do others around me and so did our son. He could do it within a blink of an eye and also using seven different kind of communication devices. So how do we do it within a disability realm? Whatever you say a disability is, there's definitions and then how whatever that means for an individual, all of it is here and legit and powerful and um it brings all of us into a realm that can be moving forward together because we all are here. We all are here. every part of us.

Alysia Thomas:  And any one of us um can become disabled in the blink of an eye.

Julia Pearce:  And if you live long enough. Yeah. Yeah.

Alysia Thomas:  And, and I don't think people really think about that when they think disabled.

Julia Pearce:  No.

Alysia Thomas:  I, I mean they think a lot of different things, but I don't think anybody realizes it. It's just that fast. something can happen and you might be the next disabled person you know and it does not change your value it doesn't change your worth.  

 Julia Pearce:  No.

Alysia Thomas:  Um, and it doesn't change your ability to find joy in life either, so kind of uh, so we usually like to close up by asking our guests if you could talk to somebody who's been newly diagnosed with a life-changing illness um, that is feeling completely lost what would you say to them what would you want them to know.

Julia Pearce:  So, I go back to that um beginning step for me. And it was a long time ago, right? It feels forever. When I let people know how long ago, they're like, "Wait, did you have phones?" And I'm like, "Oh, look how cute you are. That's nice. Yes, we had phones." Um what I would say is uh please find somebody who can listen to you and sometimes there's not a fix. We people look for a fix now. Sometimes there's not a fix. You don't need to be fixed. And know that if you need to say something, please say it out loud and ask your questions. 

It is okay to find spaces where the feelings, the perplexion, the having all of the things that are coming to you and saying, "I I don't know if that's right for me." It is okay to have all of that coming to you and then choose one thing to try to consider to learn more about and then rest when you need to do that pause. It's it's the beginning of things. Um it's the beginning

Stacy Griffin: I love that. All right. On the opposite side of the coin, what can loved ones, friends, family members, caregivers do to support someone navigating medical issues and grief?

Julia Pearce:  Listen to them. If they say this is not working, then trust them. Don't say, "Oh, can you give it a little bit more time?" How about did you do it enough times today? And the phrase, "at least you don't have it as bad as uh," a phrase, that starts with "at least" should not be said uh in any situation, including when somebody is saying, "Wow, that was hard to hear."  

Julia Pearce:  And the phrase at least bringing up somebody else, you know, gives them the cue that you are not the person that they can come to and they won't they will find somebody else and they might be super kind and nod their head, but they won't be you won't be the one. And that's a hard that's hard. Um, that's what people around can listen and let them talk. Let people talk or not. Oh my gosh. Or not. Yeah.

Alysia Thomas:  And finally, what would you say living fully means to you today?

Julia Pearce:  Living fully has come um hard fought for me, and, and I somewhat hold that close to me because of how it's come. So to me living fully means asking the question of so what am I going to do and that looks different almost every day but what am I going to do came after our son passed away and somebody came to me who had worked with him and said, "I don't know what to do anymore if Dallin's not here," that's our son's name, "if Dallin's not here then, I don't know how to move forward," and what a tender thing, a tender kind thing to show the worth of somebody.  

We going back to worth because he had such an impact on the universe and to fully understand that what is the word understand that power of an individual. So if we knew that what we choose to do had that impact, what are we going to do? So to live fully, that is the question I ask. What am I going to do? And in our house, we ask that question every day. So what are we going to do? And that is how we choose to live fully and living with grief and joy.

Stacy Griffin: Thank you so much for this powerful conversation today, Julia. We're so grateful that you came. Your insight, your honesty, your compassion are exactly what our um listeners need to hear. We know that this episode will speak very deeply to many of them. And to all of you who are listening, if today's episode touched something inside of you, you're not alone. We're honored to be part of your support system.  

Julia, is there anything else that you would like to mention to our audience before we close today? anything about where they can contact you or any publications or anything of that nature that you'd like to share?

Julia Pearce:  I would love to stay in contact with anybody. You can find me on my website. That's juliapearce.net. I'm also on social media, LinkedIn, and all the places. I do have a bereavement group that you can find as well. That's called Changed Forever. Love is always here. Thank you so much for having me. It was a lovely time.

Stacy Griffin:  Thank you for being here.

Alysia Thomas:  Yeah, thank you so much. We loved having a conversation with you. Um, and to our audience, as always, be kind to yourself. Rest when you need to. Don't forget that you're not alone on this adventure. Um and and join us. Join us on Autoimmune Adventures. See, check us out online. Uh, listen to our other episodes, like, subscribe, share it with your friends or family who might find some benefit from from this episode.

Remember that you are worthy of joy. Your disease does not define your life. You do.