How to Find Your People When You Feel Invisible with Katherine Wolf

E23—The meals stop coming. The texts slow down. And suddenly you feel like you’re navigating disability alone. Friends can be great at showing up in a crisis, but how do you find community for your family when life stays hard day after month after year? Katherine Wolf, stroke survivor, mother, and disability advocate, shares her story with Amy Julia Becker. They consider:

• Grief
• Limits of toxic positivity
• Finding community that helps families survive and flourish

00:00 Introduction and Connection
03:37 Is a Good Future Possible?
08:45 The Role of Community in Healing
13:01 Sustaining Community Connections
18:31 Navigating Disappointment in Community
21:05 Creating Long-Term Connections
25:12 Taking Steps Towards Connection

MENTIONED IN THIS EPISODE:

• Hope Heals
• Hope Heals Camp
• GoodHard Story podcast
• Voxer

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WATCH this conversation on YouTube: Amy Julia Becker on YouTube

SUBSCRIBE to Amy Julia's Substack: amyjuliabecker.substack.com

JOIN the conversation on Instagram: @amyjuliabecker

LISTEN to more episodes: amyjuliabecker.com/shows/

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ABOUT OUR GUEST:

Katherine Wolf is an author, advocate, and co-founder of Hope Heals. After she survived a near-fatal brainstem stroke at age 26, her family’s journey through disability has become a public witness that good and hard can co-exist in the same story. Through caregiving, storytelling, and lived theology, Katherine is inviting others into a vision of hope, interdependence, and embodied resilience. She and her husband Jay live in Atlanta with their two sons.

Website: https://hopeheals.com/

Instagram accounts: @hopeheals; @opehealscamp; @mendcoffee

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Take the Next Step is produced in partnership with Hope Heals Camp. Hope Heals creates sacred spaces of belonging and belovedness for families affected by disabilities to experience sustaining hope in the context of inclusive, intentional, inter-ability communities. Find out more about our resources, gatherings, and inter-ability communities at hopeheals.com. Follow on Instagram: @hopeheals and @hopeheals.camp

Transcript

Note: This transcript is autogenerated and does contain errors. Please check the corresponding audio before quoting in print.

Amy Julia Becker (00:06)
I'm Amy Julia Becker and this is Take the Next Step, a podcast for families experiencing disability. We've teamed up with our friends at Hope Heals to bring you weekly conversations with fellow parents, therapists, and disability advocates about practical ways to cultivate a thriving future for the whole family. Here at Take the Next Step, we see your family as a gift to our society and to your local community. Your family matters, your child matters. We need you among us.

Well, friends, I have a treat for you today because I'm talking with the indomitable Katherine Wolf, co-founder of Hope Heals, author of multiple deeply good and true books, podcaster, disability advocate, mother of two boys who are also fantastic, and wife of Jay Wolf, the other co-founder of Hope Heals. So I'm so excited to have Katherine with us today. We're talking about community, what it is, why it matters, how to find it.

And I do have one thing I want to add here at the top. After we started recording, Katherine and I were talking about this conversation and she mentioned to me that when we talk about community, we often approach it with either too much optimism or too much pessimism, as if it is either going to be the glorious answer to all our problems or a terribly hurtful experience that could never be good. Instead of optimism or pessimism, she exhorted us to be realistic.

about the ways we will experience both strong connection and disappointment within sometimes even the very same relationships. So with that in mind, looking not to be optimists or pessimists, but realists about it, here is my conversation with Katherine Wolf about how to find your peace.

Katherine, it is always a treat to get to talk to you. Thank you so much for being here today.

Katherine Wolf (01:58)
Gosh, it's such a blessing to talk to you, Amy Julia. And I just got to meet with you last weekend. So it's really fun to see your face again, even if they're screened this time. I'm loving, I'm getting a lot of Amy Julia back recently. Woohoo.

Amy Julia Becker (02:14)
Well, the feeling is mutual because I also love getting a lot of Katherine Wolf and I'm so grateful because I know that we increasingly just are able to get to do things together and that really includes this podcast because Hope Heals as listeners hear me say, Hope Heals is a partner and supporter of this work and I love getting to work together and I love the work that you do. So thank you for all of that.

Katherine Wolf (02:39)
You better since you're on the board of directors, I can't contribute this summer. And yeah, your, your footprints, you and the Hallbacker family are just such a special part of our camp community. it leaves the charge as she's at the helm of just a really sweet connection to, ⁓ yeah, the Hope Hills camp world and beyond.

Amy Julia Becker (02:43)
Yes, that's true!

Well, we could go on and on about that, and I'm not gonna let us do that because as we were talking before, we're mindful of everyone's time who's listening to this podcast, but all of these things link together. as you know, here at Take the Next Step, there are kind of three broad topics we're talking about. We're talking about starting with delight, connecting to community, and taking the next step towards a good future. And I want to talk here today about community, but I thought I'd start by asking you if you could share a little bit of your story

And what has it taken for you to believe that a good future is possible? So many people with a story of disability stop being able to imagine a good future. They stop believing that. And like, I know that you do believe a good future is possible, but that hasn't always been the case. So what did it take for you to believe that a good future is possible? And for anyone who doesn't have your background, you obviously can give a little bit of that too.

Katherine Wolf (04:01)
Yeah, in a quick nutshell, because I love that you are aware of that for those of us listening. It's brilliant. Keep it short and sweet. As a 26 year old, completely typically able-bodied person with no medical history or family history or symptoms, I had a massive phrenic stroke, very nearly died and subsequently became severely disabled as I largely remain today.

I cannot drive a car. Obviously as you're seeing, my face is paralyzed. I cannot walk unassisted well and I use a wheelchair and several adaptive devices. I have a hand that doesn't have fine motor control. I'm deaf in one ear, I'm nearly blind in one eye. I have double vision and honestly many, many more health challenges and yet...

I have an incredible flourishing life and have a tremendously hopeful future. and I mean, I almost feel embarrassed by how great my life is half the time. And I think a lot of that has to do with how I choose to see this story. And we'll probably get to that, or maybe this is the moment for that.

Amy Julia Becker (05:20)
Say a little bit more about that, because I did just want to frame a conversation about community within this belief that there is hope, there is goodness, and there are possibilities for the future.

Katherine Wolf (05:34)
Absolutely.

say that I guess early on after the death of settled, you know, within the first year, you know, I'm trying to figure out how I'm going to live this life and I don't fit in the world anymore. I, I surely I'm supposed to be in heaven right now. Cause this is.

True hell on earth. Like I'm not supposed to live this way. And I came to the point of recognizing that if I was supposed to have died, I would have died. And I did not die. So therefore I am supposed to be at this intersection of time and space right here.

right now and therefore I am worthy of taking up both time and space even as a person living with profound disabilities. I don't know, mean that level of confidence really feeds itself. It fuels you to recognize like, ⁓ this is a calling. I'm still alive on earth.

I want to live a life worthy of this calling as Ephesians 4.1 says that I almost from the early days felt a little bit of a charge that things are so awful and messed up and not right that this is too intense, too precious to waste. My pain, even from the early days, I realized my pain.

is simply too precious to be wasted. And I think that mindset is very powerful for people living with disabilities of all kinds, or people who have accidents and become people who are living with disabilities is like, it's really awful on the one hand, it can be, not always, it can be. So there's an extra like sense of clarity of purpose or something like.

This is a nightmare. got to make sense of this madness. Probably not what you were wanting me to say, but honest.

Amy Julia Becker (08:09)
No, exactly. And I think actually, I think that's part of it because we've you and I have talked before about toxic positivity and how if we are simply trying to say, no, everything's great. What do you mean? It's no big deal that I have double vision or take any number of the things you said. Like, those are big deals. It's hard. Sometimes it's awful. And that actually does not dismiss the idea of you having a purpose.

of being worthy of attention and of contributing something to this place, to these people. And all of those things being true is actually part of what I wanted to kind of get at. And then I think my next question for you is in like the role of community in your story, in coming to those conclusions, in continuing to walk out this, you know.

good hard story as know, podcast is called for a good reason. Yeah. What role has community played in that?

Katherine Wolf (09:06)
Immunity has been huge from the very beginning. ⁓ When I was first taken into the hospital for the initial brain surgery, ⁓ evidently, I mean, I've only heard this, I was upstairs dying and in surgery, but evidently, ⁓ pretty quickly the word spread among largely our Sunday School fast from church and dear sweet friends. And it was a Monday.

at noon and in the waiting room starts to gather people for the next 10 hours. There grows to be about a hundred people who have taken off work in the middle of their Monday and come to just talk to Joel in the waiting room. So like that we're seeing me, Jake can remember walking in and being so confused. how, how are all these people here? And so that

It's what eventually they made a banner that said Katherine's Corner. And for the next three weeks for the initial ICU stag when I'm on life support, at least one person would be seated in Katherine's Corner praying for me upstairs. Really just makes you want to cry. And in addition to that, in those early days, I could not even eat food at all. And yet.

This was long before things like meal train existed. And so you had to do like reply all emails and some sweet friends set up a growing, growing, growing list of people to bring meals to the hospital for my family to eat. So none of them would have to worry about leaving. And that level of...

community and this was in Los Angeles where neither my husband nor I were from, which was crazy because when you're by yourselves like you're your friends become family because it's electric and you only have each other. Um, but that was in person. Then the internet was just really kicking in 2008. The iPhone came out, people were connecting for the first time.

on social media, Facebook at the time, and people were starting to blog. So the word quickly spread. And something about this super young mom who could not eat food, it just kind of went crazy. And suddenly strangers in China are sending me mail. It was really, it was nuts.

That level of community, both online and person from our history, where both were big Southern families, just meant there was a lot of people in the mess with us. know, and we'll tell you what was the most helpful of all that community were the ones who just let us feel the terrible feels and didn't try to make it okay.

Because it wasn't okay. It was awful. friends, some friends, not all, some could go there and acknowledge it and let it be what it was, which was horrific and shocking. then that same community began to help me put the pieces back together and say, I can do this life.

Amy Julia Becker (12:39)
Well, and how about because I'm sure there are people listening, some of whom have had some sort of similar response. Our story was not the same, but at the same time, we had a huge wellspring of response when Penny was first born. And then both of us have now been kind of walking these stories for, in my case, two decades, in your case, almost that long. Right. And so that initial...

everyone is mobilized and energized and like praying and bringing the meals and doing all the stuff. Like eventually that is not what everyone is doing and that's kind of appropriate. But you can also end up feeling kind of left behind or forgotten. Like ⁓ how do you stay connected to community? Do you have any thoughts on that?

Katherine Wolf (13:21)
Absolutely. And you are exactly right. What I have just shared is the most unrelatable story of all time. I'm highly aware of that. It's almost like I want to lie and make it more relatable. But it's not. And I have to own my story. We all do. And communities showed up. And what community that level did to me was now make me seek out the ones who don't have it. So I don't see it as just like, oh, look at me, this really cool story of all these people.

It's a charge. feel very strongly that if you are more fortunate than anyone else in any regard, you need to spend your life building a bigger table and saying, come sit with me. So yeah, I got baggage because it's been so great, but I am at least focused on let's do it for the next one coming. anyway, what was your question though? I apologize.

Amy Julia Becker (14:18)
just like, yeah, how have you stayed connected to community? But I also love what you've just said because I mean, Hope Hills Camp, which many listeners know about, is a very direct response to we have received something that not everybody gets. How can we create that for more people? And that's working. It's happening in the context of people, but also of relationships coming from that. So I really love that for any of us listening who actually have received.

that kind of support to recognize that we now have something to give because of what we've received.

Katherine Wolf (14:51)
do, I'm a firm believer to who much is given, much is expected. We're responsible for a lot. How we live matters if we are here on planet earth. Regardless of the capabilities of our body, we have a lot to offer the world. Specifically in terms of how do I cultivate community now, I am living in a posture of welcome,

Come into this story, be a part of this. I obviously you are very aware and as you're saying about camp, I love creating sacred spaces of belonging and belovedness. 100%. I long to make hope accessible to a whole lot of people. And I've definitely...

I think the phenomenon that can happen, and it's probably happened to you as well, let me tell you, you heard this way as well, is that beautiful truth in some translations of Psalm 41, where the Psalmist writes, you have enlarged my heart in my despair. That's right. You have enlarged my heart in my despair. And I think that's the opportunity we have with trauma of all kinds. And initially,

For you, having a child that you did not know would have disabilities, for me, overnight, becoming a person living with profound disabilities, there's trauma involved. But post-traumatic stress is not the only reality. Yes, that is completely real, 100%. However, neuroscience goes on to teach that there's also post-traumatic growth.

that can happen, that we actually can grow because of the trauma. Nothing so much of growth and community is actually linked, and that when you are growing and your heart is enlarging, you want to bring people in to come with you. You want to find the people who probably don't have the people and make some new people. And I think go big, do that big. Our world would be different if we did.

Amy Julia Becker (17:12)
Well, and if you think about it, I mean, the number of nonprofits that exist because of people having a hard experience, recognizing that so many other people are alone in that experience and wanting to create a space or ⁓ a means of possibility for people to both gather and share experiences and grow together is so, it's just a very real phenomenon. And I love that idea that as we are growing and enlarging what we want, there's just a very human

response of wanting to bring people together into that. And ⁓ that's very beautiful. And I've certainly been one of the recipients of that through HopiEllism. I'm really grateful for it. Yeah.

Katherine Wolf (17:52)
It is, it's such a joy. mean, you can say this as well. Look at your incredible flourishing. And from the platform of tremendous pain, we go. And that's a beautiful way to look at the world. Like the worst thing that has ever happened to me by far has led to many of the best things that have ever happened to me.

And I have chosen as I tell you that because it's so beautiful and true that many times the worst things can end up being some of the best things.

Amy Julia Becker (18:31)
⁓ I'm curious about the experience of disappointment with community, like with people, right? I mean, because I'm sure on the one hand, people have showed up and they've been awesome, but I also know that people have said the wrong things. They've not shown up. They've, you know, all of that. Like, what do you do in the face of either the disappointment or the feeling of like rejection, misunderstanding? ⁓ yeah. You know, all the people who are...

praying the prayers you don't want them to pray or whatever it is.

Katherine Wolf (19:02)
my gosh, literally, I can't tell you how much of that I've had. Strangers in the grocery store, I mean, it's too much to go into, but yeah, I've unfortunately been the recipient of both well-meaning but super-off strangers or dear family and friends who were so deeply wounded. And yeah, I just know too much within the disability community to know this is a universal thing.

People, even dear, well-meaning Christians rather than sisters, just weaponize scripture and say the things they're praying for that's so often just really manipulate, so sad. Okay, so here's what I've come to that we must do. I think to cope in this world, in this body, I have had to develop very thick skin.

but make a decision to keep a soft heart. So I'm not bitter. If anything, I don't let their weird comments throw me. I just kind of receive it, nod my head. it would take a lot to really wound me at this point because I'm like, I've heard it a lot and maybe I've scrooged it a lot. And I think I've cultivated some thick skin.

On most days, that's enough. On some days, I just want to get back in bed and say, this is really hard and very annoying. But most of the time I'm like, yeah, try to hurt my feelings with your weird comment. I don't care what you think. I don't know you. You are not on my soul's board of directors.

Amy Julia Becker (20:49)
Yeah, yeah. Well, and so let's talk about that for a minute in terms of who is on your soul's board of directors. Obviously you.

Katherine Wolf (20:56)
You are on my ministry board of directors and Saul board of directors as resident theologian for offering disability for me and because you're so cool.

Amy Julia Becker (21:06)
Well, thank you very much. welcome. But let's finish here, or I might have one more question after this, but what does long-term sustaining connection look like? Not the crisis connection, but the ordinary life community and connection. What are some crucial elements of that for your own experience?

Katherine Wolf (21:27)
Totally. You know, I use this amazing app. This is unexpected answer, but I'm being honest. I use this app called Boxer. Do you know I do right now? V-O-X-E-R. I think it would be highly beneficial to the community of people listening to this podcast. Yeah. Because all you do is just talk. There's no texting and looking at the screen. Now you just talk. And site leaving voicemails back and forth, walkie talkie.

And I would say there are, you know, a lot of people that I'm voxing with regularly in different parts of the country. And it keeps me very connected to the people I want to be connected to. There's a voice mail that can be an actual voice mail if you don't want to get the app, but I like it. ⁓ I don't know if that's that close to your meaning or more like holistically.

Like choosing to say, Hey, this person seems to be a person that I want to do life with. So I'm going to keep up with them even if they live in Idaho right now. Like I'm not going to let things like time zones and lack of in-person presence mean I can't be close to someone who I do want to be able to speak into my life.

Amy Julia Becker (22:52)
And then you also have some regular group of people you meet with in person that I've heard you speak about. Will you also mention them?

Katherine Wolf (23:00)
totally. So everyone should do this. I have, I created a group because I wanted this in my life. I have a group of ladies, there are seven of us called the SOS Club Ladies, Sisters of Suffering. And each of them has known intense suffering of different kinds. And we get together and we don't look away. And we let you say it as many times as you need to.

and process and receive the empathetic eyes and bodies of each other. And we don't do prayer requests because we got way too much to pray for that we can't tie up in a neat prayer request. We don't look away and we say with our bodies, we are not leaving. We are staying for this really hard story and we are not making it okay for you, because it's not okay.

So we're not saying like, it's all somehow working together. We don't know. Like we just sit with you in it and say like, this is so terrible. And I am horrified that you are living this reality. It is the worst. And I'm shocked that you were having to hold this. I'm shocked. And that is healing. Like that is freedom. Like, thank you. Thank you so much for.

being outgrades for me that this is my life.

Amy Julia Becker (24:32)
Well, so thank you so much. I'm so glad we got both of those, kind of the the Voxer answer and the SOS seven people committed to each other answer, because they're almost different aspects of the same thing of just being connected to people. I'm thinking as we come to a close of people who are listening, who are feeling alone, and I'm going to say a couple of things I've heard you say that I think could be taking the next step towards connection instead of loneliness. that, you Voxer.

creating a group that you need and making it happen. You also mentioned just having a posture of welcome and ⁓ the thick skin, soft heart. So there is a sense of like, people are gonna say the wrong thing and having to like learn how to endure that. ⁓ Is there anything else that you would say to someone who's feeling alone and listening to this in need of connection in terms of just a small step they could take?

Katherine Wolf (25:25)
Yeah, the small step always is to reach out to one other human being and see what happens. Whatever that looks like for you, take the next step can be a very small step, I believe. It could be a text to someone else, like, can we get coffee? Can I talk to you? And maybe it's like 10 people don't care and they're a big no, but maybe the 11th is like, I desperately need what you are in my life.

And I think that is what we must do is find the people who need the people and then they become your people.

Amy Julia Becker (26:03)
Well, thank you for being someone who has created a bigger table for more and more of us to join in on and for the ways you do that in your life and in your ministry and even just by sharing your story. So, we're really grateful to have you here today.

Katherine Wolf (26:17)
I love this podcast. love that it exists in the world. What a gift. What a gift you are AJ

Amy Julia Becker (26:26)
Well, again, the feeling is mutual and we're glad you're here.

Katherine Wolf (26:30)
Thank you.

Amy Julia Becker (26:35)
Thanks so much for joining me here at Take the Next Step. The show is produced in partnership with our friends at Hope Heals, a nonprofit that creates sacred spaces of belonging and belovedness for families affected by disabilities to experience sustaining hope in the context of inter-ability communities. We have more great conversations in store for you, two more in fact in this season. Next week I'll be talking with Shelly Reynolds about planning for the future.

And then as a capstone conversation for this season with Mike Erie about being the dad of a son with disabilities. As we come to an end here, I will always be asking you to follow, rate, or review this show. We would love for more people to know that this resource is available. And you can just share that in a very organic way as well.

send me questions or suggestions. are hoping to produce more seasons of this show next year, next fall. So please send any questions or suggestions my way by tapping the send us a text link at the end of the show notes or emailing me at amyjuliabeckerwriter at gmail.com. want to thank Jake Hansen for editing the podcast and Amber Beery, my assistant for doing everything else to make sure it happens. And as always, I want to thank you for being here and for listening. I hope you leave this time with a

encouragement to start with delight, connect to community, and take the next small step toward a good future for your family.