I Don't Know How You Do It

From Hairstylist to Rare Powerhouse with Effie Parks

Jessica Fein Season 1 Episode 1

Jessica Fein welcomes Effie Parks to the I Don't Know How You Do It podcast to discuss Effie’'s journey as a rare-disease mom. Listen in as Jessica and Effie talk about how Effie went from being a hairdresser to becoming a leader within the rare-disease community. Find out what her oxygen tanks are that get her through every single day, how she describes what real self-care looks like, and how she found the connections that changed her trajectory. Effie's mission is to lift voices of the community, connect people to resources, and to leave this world better than she found it.

Follow her at
www.effieparks.com and www.onceuponagenepodcast



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Music credit: Limitless by Bells


0:00:02

Intro

Come along now the sky is endless now we are limitless we are limitless now come along now welcome.

0:00:16

Jessica

I'm Jessica Fein, and this is the I don't know how You Do it podcast, where we talk to people whose lives seem unimaginable from the outside and dive into how how they're able to do things that look undoable.I'm so glad you're joining me on this journey, and I hope you enjoy the conversation. I am so excited to introduce you to my guest today, Effie Parks. Effie is a force within the rare disease community. She's not only somebody who other people look at and say, I don't know how you do it, but she's somebody who, through her own podcast, helps so many people who are feeling overwhelmed or lost or isolated figure out how they can do it, too.

Effie has been a huge inspiration to me and to so many other people. And I can't wait for you to get to know her, hear about what her journey has been like as a rare disease mom, how she pivoted to become a leader within the community. And learn about what her oxygen tanks are that she looks to to get her through every single day. But let me tell you a little bit about Effie's background. First, Effie was born in Montana, where she was raised with twelve siblings. She moved to Washington and married her husband. And then they were blessed with the birth of their son, Ford Cannon Parks.

When Effie learned that Ford had been born with an extremely rare genetic condition, CTNNB1 Syndrome, she dove into the world of advocacy. Now she has her own podcast, Once Upon a Gene, where she speaks to others about their journey through life with rare disease. Once upon a Gene has been awarded Best in Show podcast by Wego Health. Podcast Magazine recognized Effie as one of the 40 under 40 podcasters, and she has been nominated for two Champion of Hope Awards from Global Genes.

Effie's mission is to learn, lift voices of the community, connect people to resources, and to leave this world better than she found it. Welcome, Effie. 

0:02:11

Effie

Hi Jessica. Oh, my gosh, that intro. I'm like, whoa, turning red. Thank you so much. 0:02:16

Jessica

You should be turning red.

It's pretty awesome. And I'm so excited to have you here because I feel like you're the godmother of podcasting in the rare disease space. And to have you as one of the very first guests on my podcast feels like such an honor.

0:02:31

Effie

Oh, my gosh, it is a thrill to be here. I love you so, so much, and I am so excited that you're starting a podcast. We need all the voices that we can manage on this medium. I believe in it so deeply, and I'm so excited to be your guest. I feel so honored. Thank you very much for having me. Thank you.

0:02:52

Jessica

Thank you for being here and for your patience with me. As I figure it all out, before we get even into what we are here to talk about, could we just pause for a minute and talk about twelve siblings?

0:03:04

Effie

It's so funny how shocking that is when I say it to people, because for me, it just doesn't really seem like that many people. Like every one of them has such a purpose and they're all so needed in our family that I can't imagine one of them missing.

0:03:21

Jessica

Well, what's just amazing is we're here to talk about things that other people find unimaginable, right? We're talking about people who have been on the receiving end, like you and I have, of so many people saying to them, I don't know how you do it. And I can imagine that your mom must have been hearing that all the time when she told people she had twelve kids.

0:03:42

Effie

My mom is like this, I always explain her as like, this otherworldly hummingbird. My mom taught us all how to breathe, and she taught us how to be centered. She taught us that it was a practice and that it was a constant practice. And I feel like I was learning what real self care was my entire life. Before my world went with Ford, she gave me a lot of coping skills.

0:04:08

Jessica

First of all, I love that in other worldly hummingbirds, because I feel like if I had been creative enough to come up with that, I might have described you that way.

0:04:17

Effie

Oh, my gosh, you're so sweet.

0:04:19

Jessica

But that's amazing to grow up with these skills. And little did you know how much you were going to need to draw on them. Right?

0:04:25

Effie

Amen.

0:04:26

Jessica

Tell us about Ford.

0:04:28

Effie

Sure, yeah. Ford. What a goofy little kid. He's six years old now. Ford was born with a rare genetic disorder called CTNNB1. We knew something was wrong with Ford right away. He wouldn't eat, he wouldn't swallow. Nobody believed us. Everyone told me I was a worried mom and maybe my football hold was a little off and all of this stuff that he was going to catch up. And ultimately, after a couple of months, our pediatrician finally listened to us and agreed that there was definitely, in fact, something alarming with Ford.

0:05:03

And he was admitted into Children's with failure to thrive at three to four months old, which then started the onslaught of all the appointments and the diagnostic odyssey, which we thankfully got sooner than a lot of families do. We got his diagnosis of CTNNB1 at 16 months old. We were told there was no cure, there was no treatment. There was nothing I could do but to take my baby home and love him and get him into early intervention.

And that's kind of the narrative for a lot of us in the beginning.

0:05:37

Jessica

It definitely is. I mean, we were lucky. We had a diagnosis relatively early, but when I say relatively, it still took a long time before any of the doctors took us seriously. Now let's go back into what your life was like at that time. You were running your own business as a hairstylist, is that right?

0:05:57

Effie

Yes.

Oh, my gosh. Nobody ever knows that I was a hairstylist. Jessica yes. I had a cute little salon in downtown Seattle with the most amazing clients who had been with me forever. And, yeah, I was pregnant, working. I got so swollen with Ford that by the end of the day, I was literally the barefoot pregnant lady. None of my shoes would fit. I'd stand for 10 hours a day. But thankfully, I had the best clients ever. And they were like, okay, your foot is kind of coming out of your shoe. Maybe you should take it off.

0:06:28

So, yeah, I was working as a hairstylist, which then actually became a really difficult job. I think you of all people know that when you're going through something or when the worst thing happens, you can't really be a sounding board for other people and what you think they think problems are.

0:06:47

Jessica

Exactly. And, you know, it's funny because I think about when we go to get our hair done, it's kind of like almost being in the therapy chair and you're just chit chatting and, you know, unloading everything. And you must have been listening and just being like, oh, man, you have no idea.

0:07:01

Effie

Yes. And as any good hairstylist is and should be, I didn't ever give that back to them. Right. I was there as a listener, and I was there as your service provider, and so I just absorbed it. Very few of them really knew the extent of what I was going through, and they always asked. Like I said, I had the most amazing clientele, but you're still that person providing a service to someone else, and it's not your place to be like, oh, yeah? Well, let me tell you about all of the awful things that are going on in my life. So it became very limiting, and I think it was one of the things that contributed to me having my first bouts of what I found out. Anxiety was where I felt like I was choking and I couldn't talk because I couldn't talk.

0:07:46

I couldn't tell anyone what I was going through because I was their hairstylist.

0:07:51

Jessica

Right. And I know you've said that you felt, like, claustrophobic and experiencing anxiety for the first time. And of course, with that kind of diagnosis, there's just so much anxiety. There's so much unknown, there's so much grieving, even while you're actively parenting. So how did you pivot because you were in this service oriented field. You're waiting on other people, making other people feel their best, and meanwhile, inside, it sounds like you were just feeling worse and worse. So what happened?

0:08:24

Effie

A couple of things, really. I started searching for people like me. Right. So that's how I came to the beautiful world of podcasts that was looking for blogs and stories and trying to find anyone that was like me. There were Facebook groups, but those are only so helpful. So I was finding stories on podcasts and then ultimately, like I was mentioning, I got to that point where I was like, this is affecting my body and I can't go on like this. I can feel something is wrong with me and I have to take care of this beautiful child, so I have to go and help myself.

0:08:58

So my mom, being this amazing body working witch that she has been, I use that word lovingly. One of my sisters is actually a somatic therapist and she does a lot of bodywork. So I called her and I was like, I have to come to Salt Lake and you need to work on my body and you need to talk to me about what's happening to me. And I went down there because I was so dysregulated and I couldn't take a deep breath. I knew I had to do all these things to take care of Ford and to figure out how our life was going to be like and I couldn't start it with the way I was feeling. So I went and got some somatic therapy, which is similar to EMDR but actually different in a lot of ways, and just kind of went down, got centered, had my sister talk to me about why I was feeling this way.

0:09:42

I started naming things I didn't know that I could use the word anxiety. I had never had any type of issue like that in my life. I started using the word grief, which was another pivotal moment in my story, was when I realized that I could use that word and my child was alive, was one of the most liberating moments for my body and my overall mental health. So when I started using the language and I decided to take control over how I felt physically and then finding stories, I think those are the three things that completely helped me reset and regulate my body and decide what I was going to do.

0:10:20

Jessica

That's so amazing. First of all, I just completely relate to finding the words. I also was really resistant to the word grief. When I was sitting there looking at my daughter, I was like, there'll be time for that. But that time isn't now. And meanwhile, we had so much to grieve, right? Grieving what we thought motherhood was going to look like and what we thought the future was going to look like. And then the lost functionality. So it is empowering to find those words. But I love how you talk also about taking agency of your own body and knowing that you can be in control and say, yes, this is anxiety and this is what I'm going to do. So what were some of those tools that you used to tame, if you will, the anxiety.

0:11:01

Effie

Man. I know everyone is so sick of me talking about my oxygen tanks, but my sister taught me about my oxygen tanks, and she told me to make it visual. So I bought a big black magnetic chalkboard piece, and I put it on my entire fridge, and she said, draw four oxygen tanks and put in there what you have to have every single day, or you're going to feel that choking sensation in your throat. And it was just so easy for me to think of the things that kind of alleviate that stress. And for me, it was eating something healthy in a day. It was focusing on my breath in a day. It was going outside of my apartment into the real wind and air and sky in a day. And it was moving my body as a caregiver, too. There are so many days that just melt into each other and you feel like you're not doing enough, or did you even do anything. You don't feel like you got anything done. And that's kind of one of the vicious circles. But just having those four simple things oh, drinking water was my other one.

0:12:03

Just having those four simple things that were my tasks just for me, I got to check something off the list. Like I was being productive when I felt like everything was in shambles. And I'm trying to figure out this feeding tube, and he's vomiting all over me, and like, I'm going to the doctors, and my friends are doing God's knows what. But I had control over those four things, and I felt like I accomplished something in a day.

0:12:27

And all of those four things were habits that I had to create for myself to be okay, which made me stronger every single time I did them. And it created this kind of, I don't know, life jacket, right? Like, even if stuff did get awful and terrible, and whether it was a mental place or a sickness thing, with Ford, I had this baseline of what I knew my body needed, and I had this reservoir of ways I had been taking care of myself to prep myself for, like, the really crappy times.

0:12:59

And it sounds so silly, but those little things that I still look at every single day and do, I've gotten the biggest bang for my buck from those little things.

0:13:10

Jessica

I love that because first of all, you're getting the biggest bang for your buck from something that is just right there. Anybody can do it. It's not like my oxygen tank was going to a spa in Bali or my oxygen tank was taking a course every night. These are really manageable things, and yet they were so sustaining for you. And it's really interesting to have the visual reminder because I think so many of us say, like, I'm going to wake up and meditate every day, or I'm going to do whatever the thing is, but your day just goes. I love the visual.

0:13:42

Effie

The visual was, like, the most important part, and I didn't think it would be. Like, I almost didn't do it. And my sister made me do it, and I'm so glad she did. And, you know, she was the first person that made me think about what taking care of myself actually meant. We're always told that, right? Take care of yourself. Take care of yourself. Can't work from an empty cup, blah, blah, blah. But nobody really knows what that means for them. I mean, they do, maybe, but most caregivers will come back to you with, I can't take care of myself.

0:14:11

I don't have any time. I don't have any money. How could you tell me to take care of myself when I have this sick kid, when what really it is is so different than what you've been told, right? Like, self care is so different. It's so boring. It's so mundane and so habitual that caregivers don't know that. And so they get even more stressed because I think they have to go on a girls trip or they have to get massages or pedicures when that is stressful. I hate having to even think about getting my nails done. That is such a waste of time to me. Like, that doesn't self care anything, right, babysitter, I have to do something. It needs a rebranding.

0:14:49

And we need to talk about that as caregivers, because what we do to take care of ourselves, to be able to be a good caregiver, is so different than what we think.

0:15:00

Jessica

And you know what's amazing is I keep going back to your mom and thinking she was modeling those very things, right? She was, as the caregiver for all of these kids, she was modeling selfcare and modeling what you need to do in order to be able to be present. And then you were so much more prepared. And so I think we are also, as caregivers, modeling these things for our own kids. So as you learned all of this from your sister, and thank God for sisters, right? However they came to us, whether they were born into our family or their people, we've met along the way. Thank God for Sisters. So you learned this from your sister, and at this point, were you still doing hair or were you starting to pivot?

0:15:45

Effie

Yes, I was still doing hair. I still did hair up until COVID of summer, like, July 2020. So I was still doing all of that, and I was working a lot. It was okay. And then I had someone to watch Ford, who I trusted and who was capable. And then that went away, and I was almost forced out of my job. Not just because my heart wasn't necessarily in it anymore, because I had so much going on, but because nobody would watch Ford.

0:16:14

Nobody was qualified enough to take care of him. So I think, like most caregivers or many caregivers, you have to make a choice. A lot of the time, it's a one parent income house because these kids start to get so many appointments. I was already dropping the ball so much at work with what I had to do to take care of Ford, because Casey's job was way more important than mine because he has our insurance.

0:16:35

And so I was already making those hard decisions and then ultimately had no choice in the end. But the choice that was made for me was the right one for lots of reasons.

0:16:45

Jessica

And what I think is so interesting about your story, Effie, is that you were in this place of feeling kind of trapped, if I may say that. I don't know if that's what I hear when I think of claustrophobic and anxiety. And you learned these tools, and you went from this place of feeling that pain to being such a leader in the community and to leading others. And I think, you know, any great leader is not, like, way ahead of everybody else. They're kind of one step ahead.

0:17:13

Come with me. And I feel like you've had the opportunity to do that when you had the shift and you created that very community that you were looking for.

0:17:24

Effie

Well, thank you. That's very kind of you to say. I feel like I'm here to learn from the leaders every single day. I came to this point where someone's story changed my life, right? It made me feel energized, and it made me feel hopeful, and it made me feel like maybe there is something I can do. And I wasn't finding connection. And I am a connective person. Like, I need relationships, and I need to understand people's lives and why they do things. And I just love people so much. And I was all of a sudden cut off from everything and everyone.

0:17:59

I felt like nobody understood anything about me, and I hated everything that you thought you understood. It was kind of like, I have to figure something else out right now. And then, yeah, someone told their story, and I was like, that's it. Just go and make it. Go find them. Go educate yourself. Go figure out that maybe there is something you could actually do for your kid. Go find the parents who are pounding the pavement. Go find the parents who are talking about anxiety and self care and grief and being in a patient advocacy organization and being an advocate rather than kind of being a watcher of these parents just being stressed out in these Facebook groups. I just felt compelled to create this community that was more streamlined and more personal, and people's stories were just touching me so deeply, and I felt like there just wasn't enough content out there at the time. And there wasn't, and there still isn't, which is why there always needs to be more. And we all have different gifts and we all come from different backgrounds. And our stories, while similar, are so different, especially because of where we came from, right. And we all have something to offer. And I think that's what I want advocates to know, because what I hear so much in what I do from listening to people's stories is how they don't feel like they belong still and how they don't feel qualified enough and how they don't feel smart enough, or all the enoughs that you can think of. They still don't feel like that. And that is so far from the truth. And there are so many ways to contribute that are so meaningful to people all over the world.

0:19:36

Jessica

It's so important because these people who are saying, I don't feel enough, I didn't sign up for this. I don't know what I'm doing, I'm not qualified, are those very people, by the way, that probably others are looking at and saying, I don't know how you do it?

0:19:48

Effie

Totally. Absolutely. They are those people. Which is so funny.

0:19:52

Jessica

So when people say that to you, when people come to you and say, I don't know how you do an effort, how does it make you feel to hear that?

0:19:59

Effie

I've had kind of this distance, for lack of a better term, in when people say things to me like I get what they're saying, I can come to the place where you're at and realize why you're saying what you're saying. And most of the time it is just being nice. It's also something that just rolls off people's tongues naturally. It's also a distance that people create because they don't really want to know and they don't really want to dig in.

0:20:24

And I have just always tried to protect my bandwidth as much as possible. And so I practice to not get angry at people's language unless it is coming from a place of hurt, anger, dismissal, you know, diminishing you. And I think you can tell. And then again, you know, sometimes if you're on the brink of something extremely stressful and you're about to have one of those anxiety attacks, you don't care.

0:20:49

And you say something back to them and you educate them in that moment, however you do it. And that's okay too. I just think that when people say that to me now, I'm like, thank you so great. But I do feel like in the beginning when I was feeling those things, of not being able to talk and tell my story and have someone here also what I was going through, I do feel like when someone would say, oh, you're so strong.

0:21:13

Oh, you're so this, that maybe that did contribute to that feeling too, because I felt like, oh, well, I guess I can't tell you that I'm actually in pain and miserable because I'm so strong. So I can see a lot of different things that it can create. And I've felt them. But I've chosen at this point, unless maybe I'm having a really bad day and you catch me at the grocery store and your kid won't stop staring to just like, let some things just completely go by me because I don't have time.

0:21:42

Jessica

That's power, right? I mean, that is grace and that is power. Because if you get upset every time, then how are you spending your energy? And you're starting from a place of knowing. Most people want to be saying a message of support. They want to be saying, I see you. I see what you're going through. They don't know what to say. And I encounter this a lot in grief. People say all kinds of things that just really hit the wrong way. And one of those in grief is also, you're so strong and it does make you feel like me, and I feel broken, I'm falling apart. Is that not okay then, if I'm so strong?

0:22:16

But I like how you are again, giving yourself the power there by saying, I choose not to let it get to me. I choose to believe that they are coming from a good place. Except that stare in the grocery store, I got really good at what we used to call my mother had a look when we were growing up, and we called it her double whammy look when she would glare at us. And I must say, I have found myself not often, but there were times when somebody would be staring at Dalia and I would just give them a double whammy look right back.

0:22:51

Effie

We've all been there. And you know what? It's okay.

0:22:54

Jessie

When you're talking to people on your podcast, one of the things that I'm wondering about is what tools do they say, this is what's really helped me a lot. Do you find themes that people talk about?

0:23:07

Effie

It's almost always stories. First of all, it's almost always the podcast that they've heard or the blog that they read or the parent that they found in a group. It's almost always connection. Because I think the biggest thing that we all feel, especially in the beginning, is utter aloneness isolation and just it's horrible. It's a horrible, horrible feeling. And you can be surrounded by love with the best friends and family and still feel like you're on a different planet.

0:23:36

So I think the main thing that people say is once they've found that connection, even if it's passive, that's the beauty of podcasts. Especially with an overwhelmed over-stressed in the trenches caregiver is you can just press play at your own pace and get that soul food from someone across the world, and you can digest it when you want it and when you need it. And you don't have to be on call, you don't have to be on the phone, nobody has to hear you crying, nobody has to see your face, you don't have to commit to a zoom call time.

0:24:06

You just get to absorb it at your own speed and your own pace, which is so vital for a caregiver who's in fight or flight to be able to not be responsible for anyone else except themselves, including being seen.

0:24:22

Jessica

We talk about being seen. A minute ago we were talking about the stares and we don't want to be seen in that way. We want to be understood. Right. So just hearing the stories is when we really feel seen. Not being out with somebody, out for a cup of coffee or at the playground, that's almost more isolating because we feel so different.

0:24:42

Effie

Yeah. Finding others, it's the most important first step that you could take in recovery and connection and healing.

0:24:50

Jessica

So, Effie, what I'm curious about is, in your life, who do you look at and say, I don't know how she does it?

0:24:58

Effie

So many parents, including you. Are you kidding me? You're like, look at me, I'm at this fancy event and I'm writing a book and I speak all the time at these amazing events and my hair always looks pretty. I have this dahlia garden now and oh, yeah, my child died. I think about the enormity of the stuff that you carry and then how you move through afterwards and inspire people still like you. Parvathy, Daniel, Jennifer, these people with these children who have lost their lives to these rare diseases, who continue to advocate, like, your whole life is now still about advocating for kids like Dalia and for parents like you.

0:25:43

And you don't have to do that anymore. Nobody is making you, and you're not doing it so she can get coverage or help or research. You're doing it because you know how important it is and someone probably did it for you. That stuff blows my mind that you can continue on in the way that you all do with such calmness about you, and you're all just so insightful and you're all so giving of your wisdom and your friendships and all you're trying to do is make it easier for someone else. And that is the most amazing thing.

0:26:20

Jessica

Well, now you're going to get me crying.

0:26:22

Effie

Well, it’s true

0:26:26

Jessica

I have to say, I feel in certain ways more committed now and I feel like I need to speak up on Dalia's behalf. And it's my mission to continue to spread her impact, right. So I know what an impact she had on people who met her. Right. And always from the time she was a feisty  little girl running around and sing songing till she lost all functionality and couldn't speak and couldn't move, she still exuded this energy and this joy and she had a huge impact on people. I hear it all the time, and I feel like if there's any way that I can continue to spread that impact on her behalf, that's what I want to be doing.

0:27:10

Effie

I love that.

0:27:12

Jessica

And so I feel like I don't have to, but I get to. Right?

0:27:16

So what final advice would you give to people who are listening and wondering if they can do it?

0:27:23

Effie

It's just like, take that step. You don't have to be perfect at anything, and you don't have to be the smartest, and you don't have to be the richest, and you don't have to have a kid that's more affected, and you don't have to be anything but you. So that is a skill and a gift. And sometimes people never know that answer and sometimes have a really uphill battle at figuring it out. But when you can, you can change the world, you can change your family system, you can wake up hopeful every day, right?

0:27:51

It is a magnificent thing to see an advocate on a mission with purpose.

0:27:58

Jessica

Being able to wake up hopeful and all the way through the journey, being able to find hope, something to be hopeful about. My father used to talk about prisoners of hope, and on the one hand, I loved the juxtaposition about being imprisoned by hope, and on the other hand, I feel like it's not a prison, it's a gift. It's how you can be free, actually, is to be able to feel hopeful.

0:28:22

Effie

I love that. You know what? That's another one of your gifts, Jessica, you're really good at the paradox thing. Like, I remember when you posted a couple of years ago about how grief and joy can mingle, and I just never forgot it because it's so real for our families, right, and naming it that way, and it's kind of poetic, it puts a softness to it. It makes you recognize that grief isn't like all evil and scary and dark and dooming, and it makes you see the other side of it, right. Because there's light and shadow in all things, and you're really good at doing that, which I think is important, because when we're talking about such serious content all the time, that it's really beautiful when you can articulate it like that and make people think, thank you so much.

0:29:09

Jessica

And I will say I have to credit Dalia for that because I really believe I learned from her that you can have the worst things in the world happening to you and you can still smile and you can still find joy and you can still laugh. And if she could do that, then I owed it to her to be able to do it too. And so I feel like for me, that's part of her legacy and just something that I didn't know to be true before, how these things that feel in direct opposition to each other can coexist.

0:29:40

Effie

Yes. I 100% feel that personally. And I know that so many of the families are nodding along because we see that every day, right? Like, we see this beautiful child and we know, the tornado that's going on, and you can just be there and be joyful about it and really figure out what you're capable of. And maybe we wouldn't have known what we were capable of to the extent that we are if not for these adorable children.

0:30:12

Jessica

And maybe when people say, I don't know how you do it, maybe that's a little bit of what they're talking about. Maybe what they don't know is how you can continue to find joy and smile and laugh when they're looking from afar and just seeing something that is maybe jarring or so different or so scary and they see us smiling and living and carrying on.

0:30:32

Effie

You know what? That's a really good point. And you know what? I think we should start owning that and taking it as a compliment because we're bad ass.

0:30:40

Jessica

We are bad ass. Yes, we are.

0:30:43

Effie

To get up every day and to do what we're doing and to not only do it, but to try to better it for ourselves and our families and other people, like, hey, guess what? That is inspiring. You inspire me, and I hope you're not offended by that. But you know what I mean. Maybe we should just own it as a compliment because we do some serious shit. Sometimes I'll conquer a Tuesday, and I'm just like, damn, Effie, you rocked it today.

0:31:10

You're in a good mood still. Like, you know what? Nobody, you know, could have done that day like that.

0:31:15

Jessica

That's right.

0:31:16

Effie

We should just take back that compliment and take it exactly where it should be. We should own it.

0:31:20

Jessica

Perfect. We are going to own it.

0:31:22

Effie

And then other days, we text each other and we cry about  it. Right?

0:31:26

Jessica

Exactly. And that's the sisterhood.

0:31:28

Effie

Totally.

0:31:28

Jessica

I'm so happy to have you on this podcast, to be able to share this life with you and these challenges and joys and just to be able to have that community. As you said, it's finding the stories, it's feeling seen, and you get back to so many people, you are a hero in this space and in the world. And I thank you.

0:31:47

Effie

It is my biggest pleasure in life, and I'm so glad I can be of service because I'm not sure I was ever really serving the world in the best way that I could. I am so grateful for you and your voice and the way that you move through this advocacy world, and I'm so glad you're starting a podcast, and I can't wait to see all of the other beautiful words that you put out into the world. You are such a special person, and Dalia is and your whole family is. So thanks for inviting me to your awesome new show, and I wish you all the success.

0:32:19

Jessica

Thank you.

How amazing is Effie? She is just such an inspiration. Okay, here are the take-aways: number one, Naming things can be liberating. It lets us take back some control and some power, when we can give our feelings a name, whether that's anxiety, whether that's grief. Number two, figure out what your oxygen tanks are and make them visual. For Effi, it was eating something healthy in a day, focusing on breath, going outside, moving your body, drinking water.

When you make those oxygen tanks into habits, it gives you some control. Number three, real self care is boring. Number four, sharing your story can change someone's life. Number five, connection, even if it's passive, makes such a huge difference. And number six, choosing how we accept what people say really allows us to take it in and understand that most people are coming from a place of wanting to be respectful and wanting to be kind. They just might not know what to say.

0:33:20

Thank you so much for listening. I've got a ton of great episodes coming up, so make sure that you follow me on Spotify or Apple podcasts or wherever you get your podcasts. And if you enjoyed this episode, share it with a friend. And finally, I'd be so grateful if you leave me a review. Talk to you next time.



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