Reclaiming Your Voice with Kate Wallinga – Write Now 149

Sarah Werner:
Welcome to Write Now, the podcast that helps all writers: aspiring, professional, and otherwise to find the time, energy ,and courage, you need to pursue your passion and write I’m your host, Sarah Werner. And today I have with me a very special and exciting guest, my good friend, Kate Wallinga. Kate, welcome to the show.

Kate Wallinga:
Thank you for letting me come play.

Sarah Werner:
<laugh> I am glad to have you here. We’ve been friends for… I wanna say years now, but I would love for you to just give our listeners a little bit of background on you and a little bit on your show, “Ignorance Was Bliss”.

Kate Wallinga:
Sure. You know, I’ve been podcasting for almost four and a half years now, so that makes me like geriatric <laugh> podcast speaking.

Sarah Werner:
Me too.

Kate Wallinga:
And I started because I’m, by trade, a forensic psychologist and crisis clinician, and I broke my back in 2014. Don’t do that was ill-advised. And so I went on permanent disability at that time. And then later developed epilepsy, which added to the excitement.

Sarah Werner:
Mm-hmm <affirmative>.

Kate Wallinga:
And by late 2017, I really felt like I – literally as well as figuratively – had no voice in the world anymore. You know, I have four kids, I’m married, my father had moved in with us. And so I felt like my entire life was about supporting other people and no longer playing an active role in my own life.

Sarah Werner:
Oof.

Kate Wallinga:
It was a lot. And so on New Year’s day of 2018, I went up to my husband and, depending on who was telling the story, I either very gently tapped him on the shoulder or I grabbed him by the shirt collar – And I said, “I’m starting a podcast!” And being a smart man. He said, “…okay.”

Sarah Werner:
<laugh>

Kate Wallinga:
And I thought it would be, I don’t know, 10 or 20 episodes explaining what forensic psychology is because that was the sort of seed idea. I would listen to a lot of true crime and they would ask questions where I felt like I knew the answer. The answer seems pretty obvious. So let me just do that. And it has ranged widely from there.

I didn’t wanna stay just in the true crime genre because I wanted to be able to talk to other people. That’s both a matter of wanting to step out of true crime because it can get kind of toxic and voyeuristic and sensationalistic and just icky – to get technical. And also I just wanted to connect with people I missed. That’s what I hated the most most about being on disability is this feeling of being literally in the same four walls most of the time and this opportunity to talk to other people was fantastic. And so it’s been, I guess said four and a half years, over 400 episodes. It’s a problem.

Sarah Werner:
Oh, it’s not! It’s a solution! It’s a solution.

Kate Wallinga:
There you go.

Sarah Werner:
<laugh> I love that – over 400 episodes. That’s such an incredible accomplishment. And I think it’s so interesting. I talked to a lot of writers and creators who create things for an audience, but it sounds like you really did this for yourself more than anything else.

Kate Wallinga:
Yeah. I’m not a people pleaser by nature because I understand that I don’t have any control over that. I don’t have any way of knowing what another human being really wants unless they tell me. And even if they tell me, I don’t know that they’re articulating it accurately or that I can do it. So all I can do is try to put together the best content I can and what that is, is conversations with humans. Collecting stories – That’s what I describe myself as, is a “story collector”. I don’t mind the editing. Like there’s a lot of podcasters that hate it. I don’t hate it, but that’s not what drives me. You know, what drives me is I have to do the editing. I have to do the publishing to push these episodes off the back end of the conveyor belt so that I can talk to more people and connect with more people on the front end. And it’s, it’s been the best.

Sarah Werner:
I love that. And also deciding that moment to take action. I wrote down- I’ve been scribbling notes as you’ve been speaking. And I wrote down this idea of “no longer playing an active role in your own life”. What was that tipping point for you?

Kate Wallinga:
I think it came to a head when my father moved in with us, but that was just the visible, outward manifestation of the chaos that my life had become. So up until 2010, I was working as a psychologist. I was functioning pretty well. I was a good mother. I was a good partner, I felt. As good as a human, I think can do you know. I screwed up on the regular, but sometimes on purpose <laugh>, you know, just for fun. And then, I had my third child in March of 2010 and effectively died in childbirth. I spent a week and a half in a coma after his birth due to an infection. Somebody in the delivery room had strep throat.

Sarah Werner:
Oh my gosh.

Kate Wallinga:
And that got in my bloodstream. I ended up with necrotizing fasciitis, which is the flesh eating bacteria. I had that abdominally everywhere and then sepsis and many, many bad ideas. And so when I came out of the coma, I remember one of the first conversations I had with my husband was, “we need to get into therapy because I don’t even know what just happened, but it’s bigger than us. It’s- it’s I can’t even define it.” And we did. And that was helpful, but I think we kept both kept thinking I was gonna end up going back to baseline. I would find my normal again. Because your brains tend to be pretty resilient and pretty elastic. And that’s what I hoped, for what I expected. And I always like, as a kid, even before I wanted to be a psychologist, I wanted to be a writer.

And so, again, doing forensic work, you do a lot of writing. You do a lot of writing up reports and then you’d testify in court and then repeat the process. And that part came easy for me. I enjoyed it. I enjoyed the process of creating the narrative and I would present my paper, not just to the court, but to the client or patient and have them read it. ‘Cause I was like, “if you can’t understand what I’ve written, then I failed in my goal because I don’t wanna use a bunch of jargon. I wanna be accessible.” And so I always thought like, “I’m gonna write an actual book someday. I can do that. That would be cool.” That that was on my sort of bucket list before bucketlists were a thing because I’m old.

Sarah Werner:
You are not. Oh my goodness.

Kate Wallinga:
Well, I remember when the movie came out. I remember being like, “oh, I’m a hipster – “bucket list.'” Cause I had one of those before it was cool <laugh> and so I came outta the coma in 2010. I had complete amnesia for the year leading up to getting sick. Meaning I didn’t recall giving birth. We took a trip to Paris with my mother and sisters – gone. All of these things were like, I could see photos of them and I’m like, “that looks like fun, wish I was there.” You know? And I mostly have regained some long term memories, although there’s still like 2009 effectively doesn’t exist in my brain anymore. I had lost my ability to hand write. Completely gone. I had to relearn. And so I journaled obsessively for the first year after I came out of the coma because I was trying to relearn how to make letters. And my handwriting looks markedly different now.

Sarah Werner:
Oh my gosh.

Kate Wallinga:
And I was able to still type, although it was difficult and it was laborious, but the biggest issue is that suddenly words aren’t there. I started off with almost complete aphasia, which is the fancy jargony name for all the words are gone. I didn’t remember my children’s names, my own name – I didn’t remember many, many things. And the worst of my wounds were on my right side. And so I would lie on my left side at night and the social workers in the surgical care unit, like the ICU, they do this thing that’s similar… I’d done it for my own children when they go to preschool of like, “all about me! My name is. My family is. My favorite color is-” and while I was in the coma, they had my husband and older children fill that out.

And the purpose for it is that it gives them a sense of doing something. And it helps remind the nurses and the doctors that this is not just a lump in the bed, that this is a person with a life, and with preferences and a history. And also I used that as like a crib sheet. I would lie in bed on my left side and I would stare at this poster and memorize it. And that’s how I learned that my favorite color was green or purple. And that’s how I learned what my name was. And that’s how I started to learn what letters looked like, and that sort of thing. And so that was sort of the first big blow to who and what I am, but you keep trying. You know, you keep trying to bounce up again. And so I didn’t realize at that point that I had lost a lot of control over a starring role in my own life, but it had started to erode.

And then in 2014, I had to leave my job when I lost my back. And my job was not about the money for me. It was not about “capitalism rules the day”, for once. It was profound honor for me to be allowed to be in the room with either someone accused or convicted of a crime and listen to their story and see them as a human being rather than, “okay, you’re a bad guy who did a bad thing. And you tell me why.” Like, it wasn’t about that. It was about, “how’d you end up here,” you know? And I was neither hired by the defense nor the prosecution. I was hired by the state. So I was allowed to just come to the conclusions I came to. And then later I went on to do crisis work because kids – kids ruin everything <laugh> they just, they do.

And so I didn’t want my kids in daycare all the time. And my husband is a college professor, so his hours are pretty limited. So I took a job as a crisis clinician, so I could work at night. And then again, I’m seeing people when they’ve walked into the emergency room and they’re saying – they’re suicidal or homicidal, or they’ve been brought in because of an overdose, or a psychotic break, or a manic episode, whatever it may be. And I’m the one who sits there and hears, you know, what happened? “What is your story?” And the fact that they would talk to me and tell me, at this most vulnerable moment ever, was such an honor. And it was such a privilege to be there. That’s how I stayed centered. And that’s how I would cope on the days when you hear the really hard stuff.

So I would remind myself: nobody else gets to see this stuff. And so losing that meant that I lost a significant sense of competence and also importance in the world. And then it just sort of decayed, and decayed, and decayed. And by 2017, I realized I’m not who I was before 2010 in the coma. I’m not who I was before I lost my job. And then I developed epilepsy in 2016, which – there’s a lesion on the right front lobe of my brain, which is where executive functioning sits. So issues such as ADHD, chronic anxiety, schizophrenia, autism all kind of stem from that one spot. And now I have a scar there. And I can’t take medication for ADHD, because ADHD medication tends to cause seizures. And so that’s fun.

Sarah Werner:
No. Oh my gosh.

Kate Wallinga:
You know, and so again, it’s this feeling of – I keep losing chunks of who and what I am and who, and what I can be and what I can do in the world. And so it was the end of 2017 that I really kind of had this realization, when my father moved in. And I think that’s when my bucket overflowed. My stress bucket just sort of hit its limit and overflowed. And I realized like I am on the brink of something here. And if I don’t find a way to feel relevant again, in my own life, much less the outside world, I’m going to be permanently lost.

Sarah Werner:
You know what? That not only speaks to me, but I’m imagining our listeners nodding along with this as well. This is so fascinating. And yet, so… I don’t even know what the right word is for it. In a way it’s disturbing that our identity as creators is so deeply tied to our own personal experience and our memories. And when you talk about losing that, when you talk about, you know, not having access to letters, and words, and vocabulary… Going back and thinking over that now, I mean, what did that mean for you as a creator, and what has happened to your creative identity throughout this journey? I think is what I wanna ask.

Kate Wallinga:
It’s become much less planned in terms of like: when you’re setting out to do a project, any project, you kind of need to have a sense of the parameters of that project. And I’m not there. I’m much more in the moment now. And so the format of my show works well because – I start every recording – I don’t call them interviews because I don’t think of them as interviews, they’re conversations – And so I start with a blank piece of paper in front of me. And I don’t plan that out. I don’t record an intro or outro until after we’re done, because I don’t know what we’re gonna talk about. That forces me to be very present and very in the moment, and I can play to those skills. But it has meant the failure… I don’t know if that’s the right word, but we’ll go with it – of at least two other projects that I’ve tried to do that required more planning, that would’ve required more structure to get off the ground. Projects, being podcasts specifically, where both of them ended up becoming like “Ignorance Was Bliss” 2.0,

Sarah Werner:
Interesting.

Kate Wallinga:
And I didn’t want that. Like – if I’m gonna do a different thing, I’m gonna do a different thing. But I kept defaulting back to a certain in the moment style and I just wasn’t able to sort of pull away from that and mentally sort of restructure. So there’s an anxiety and a change in self-definition. And that also applies to – I now I have another project coming up that I’m working on with a friend that will be fully scripted. It’s a deep dive sort of true crime serial type – not “Serial” the podcast type case, but serial, multiple episodes type case – that he brought to me because he said, “you know, more about the system, you know, more about the psychological side of things and the criminal justice side of things. You can work that.” And I was like, “sure, I can.” And then I realized, like: this means doing actual research and planning and writing, and it’s terrifying.

Sarah Werner:
Tell me more about that. And where are you in this process right now?

Kate Wallinga:
We just received the last of the FOIA paperwork, Freedom of Information Act paperwork, from the court. None of it’s been covered. I mean, it’s two little snippets in a newspaper and that’s it. That’s all that’s ever happened for the loss of this girl. She’s 14 years old. And so, if nothing else, she deserves the attention and the memory. And when my co-host to be, Jacob, he was like, “oh yeah, I put in for the FOIA a while ago, we’ll get these papers and we’ll print ’em out and work with them.” And we probably, I’m not kidding when I say we probably have a six to eight inch high stack of court paperwork and police reports and everything that I have been collecting, but not been brave enough to start reading and parsing out, “what can I do with this? How can I weave this into a narrative? How can I decide what’s important and what’s not.” And that kind of thing, and I know that it’s because I tend to be all in on projects. And I used to, in my sort of former life, before 2010, I used to run a learning disabilities and ADHD assessment clinic. And now I have it.

Sarah Werner:
Yeah. Oh my gosh.

Kate Wallinga:
You know, and so that’s, that’s fun. And one of the common features of ADHD is if I can’t finish an entire thing, I’m not even gonna start it. So having 30 minutes or an hour and a half – you know, neurotypical people can look at that and say, “well, I’ll just start. I’ll just read five pages and take notes on that.” And my brain says, “absolutely not. I can’t even begin it unless I can do this whole chunk all at once.” And so my brain has insisted, “you can’t even start reading these until you’ve printed them all.” And that should happen sometime this week, and then we go from there, but like, I’m stuck in this very like rigid brain space of things have to be a certain way, because that feels more controlled. And I need to find little semblances of control anywhere I can in this process.

Sarah Werner:
Totally. It’s so fascinating. And so I don’t know if “beautiful” is the right word. I’m gonna be struggling with precisely the right words for anything today, but the fact that there are parts of you that, and let me know if I’m reading too much into any of this, but parts of you that didn’t change, like your need for a creative project, even though the structure and the process looks maybe a lot different now than it did before.

Kate Wallinga:
No, absolutely. I unabashedly started the podcast as an escape and as an experiment, but it became this creative outlet and through creativity, I have started to feel competent again.

Sarah Werner:
Can you tell me more about that?

Kate Wallinga:
I had lost a lot of sense that I could do the things I wanted to do. Like, I am able to walk, I didn’t sever my spinal cord, but if I drop something it might as well fall into a different dimensional plane. Like if it’s below the knee, I really, really struggle to pick it up off of the floor by myself. And I can’t fold my own laundry and I have a handicap tag in my car. So, you know, there’s sort of these daily reminders of all of the things I can’t do. And you have to fight for those. You have to state your case and convince people that you’re broken. And I get a lot of, “but you don’t look sick” type feedback, which is super fun – because now I have to both be sick and convince you that I’m sick. Like that’s super fun. This is a great conversation. Would you like me to just hand you the brick to throw at my head? Because that’s what it feels like. And I had lost other skills that I had sort of picked up here and there…

You know, so I’m a knitter and I was prior to 2010. And then for about three or four years, I didn’t knit anything, ’cause I just didn’t have the hand-eye coordination. It turns out that your cerebellum, the part of your brain that does the whole moving coordination thing, does not like staying still in a coma for 10 days – not a fan. And so I had tremors and I had difficulty with fine motor skills and that slowly started to come back. But even now I can do it physically, but I can’t read the charts anymore. I can’t understand. I’ve had a flip in my brain where, prior to the brain injury, I almost didn’t read the words of the instructions for a pattern. I would just look at the chart and that’s what I would follow. And now I’ve flipped that. So they might as well not include the chart because I just see this grid of symbols that I don’t understand, but I can follow the words. And that’s fascinating to me! I don’t understand why that is <laugh> but it is. So there’s been little bits and pieces where I’ve proven like, “no, I can learn things again sometimes some ways,” but I’ve, I’ve also done a lot of compensating.

The first couple of years – and this has been pretty common with most brain injury survivors that I’ve spoken to. You spend the first couple years, 2, 3, 5, 10, who knows, you choose: faking it or trying to fake it. Trying to be the person that people around you expect to see. And there’s a look. There’s a facial expression that people get when you respond in visual quotes the “wrong” way.

Sarah Werner:
Oh wow.

Kate Wallinga:
And I am more impulsive than I used to be. I am more emotional and reactive than I used to be. I have a difficult time with physical touch. Like, I’m fine with it if I know it’s coming, but if I’m not warned, it’s a jolt and it’s not just a jump scare. It’s like an electric shock feeling. It’s it’s unpleasant if I don’t see it coming. These are all things that I spent years ignoring. I spent years struggling with words, but allowing other people to finish my sentences and pretending that that was okay with me ,because that was the polite thing to do. And it wasn’t until after I started my podcast really, where I got more and more confident in insisting on finishing my own sentences and in allowing myself to be impulsive, as long as I understand the bounds of safety and the bounds of appropriate behavior. But if I find something funny, I’m gonna laugh at it. And if I have the idea to say a thing or do a thing, and it’s within my self-assessed capacity, I’m gonna do it because I I’ve already sort of proven that life is really unpredictable. And so, if I wanna do a thing, I’m gonna do the thing and finishing my own sentence – like, that all by itself. There’s a power to that. And it’s difficult because other people are trying to be helpful. When they finish a sentence they think that they see me struggling and will alleviate the struggle. If they give me the right word. And the answer is: it’s only help if it’s asked for, otherwise it’s interference, you know? And so learning to effectively ignore people or bowl through people if they finish a sentence, especially if it’s not the word I wanted. So all of those are forms of competence and forms of feeling relevant and able to exist in the world that the process of creativity has given me.

Sarah Werner:
There’s so much here. There’s so much here. This is something, you know, so, so far outside of my own experience. I love this idea of the podcast, and the creative work in that, helping restore or recreate a sense of self, and power, and confidence. What was it about doing the podcast that helped you come to that sense?

Kate Wallinga:
I think, I mean, it starts with the simple, the first time you hit “publish”, you are a podcaster. I have released an episode about it and they still exist. I have created a set of podcast bingo cards. And it’s: as long as you hit, you know, can cross off any one square on any one of the cards, you are a podcaster. And the center square on all of the cards is “hit publish.” And there’s such a difference in proclaiming, “I am a podcaster” as opposed to “I’m on disability. Oh, I don’t do anything anymore. I used to be a psychologist.” Like I struggled for a long time with, “do I say that I’m a psychologist?” And the answer is, “yeah. Yeah. I am.” You know, I have the degrees, I have the professional experience. That is still a thing. It’s just not what I do now, but it’s very fundamental to who I am and how I exist in the world.

Likewise with podcasting, it takes a while to push through the imposter syndrome – to realize like, this isn’t serving anybody. It’s not serving me and it’s not serving anybody else to emphasize how much I don’t feel like I belong here. And I am a better mother, and a better partner, and a better human, a better friend, when I feel confident that I deserve and earn the space that I take up – not in a financial way, or even a productivity way. Although it is nice that my show self sustains, like that’s cool, but it’s more, you know, I feel that I’m doing a thing and succeeding at that thing, which makes me feel better internally, which makes me a better support to the people around me.

Sarah Werner:
Maybe it’s just because you’re an experienced podcaster, but your telling your story is so powerful. And it’s kind of funny because I’ve heard your story before, but every time I hear your story, I’m there with you. You’re such a powerful storyteller. I’d love to ask for listeners who maybe struggle with identity and/or disability and/or any struggle in life, how would you, I guess, encourage them? How would you encourage them to begin to tell their story in a way that helps them feel like they have the power they need just to even exist and claim their identity in the world?

Kate Wallinga:
I mean, you need a strong community. That makes a tremendous difference. You need people that you can say how you’re feeling on a given day and that you can trust that they’ll get. So for instance: I have my friends where if I say like, “I’m so frustrated with my kids, or I’m so frustrated with my husband.” They know I’m not saying they’re terrible people. They know I’m expressing my frustration in the moment. That makes a big difference. If you don’t have a community, there are groups for everything out there. And sometimes you find the community you need in totally unexpected places. So, you know, one of the first online communities I joined was for pregnancy after a loss. I had a second trimester loss in 2003 and then got pregnant a few months later and… That’s objectively terrifying, because I had no indication that things were going to go badly until things went badly. So I joined… this is back in the days of iVilliage-

Sarah Werner:
I remember that.

Kate Wallinga:
There you go. See, you know, like a thousand years ag. An online, text only, group-based forum. And I joined two groups and one of them was just like women due in… I was due in August, but I joined for July because my first baby came early. So I just sort of assumed that’s what was gonna happen. And it did. So I also joined one called “pregnancy after a loss”. So we didn’t share due dates, but we had all experienced some form of loss, previously. I still talk to those women on the regular. We don’t talk about our losses anymore. We don’t talk about our pregnancies, or our reproductive status – we’re just friends. Like, I’ve visited some of them. They’ve seen me. There are times where I forget how I’ve met them. And there’s a case of like, I was literally out looking for information. I was looking for, “tell me what your OBGYN has said to you about this symptom,” or, “am I the only one that has experienced this concern,” or whatever. And then it turned out I made these lifelong friends. And I think that that happening in the early two thousands helped me realize that community is maybe easier to find than you think.

I think another important thing for people is when it is safe – and that’s important – when it is safe, try not to mask, try not to pass, regardless of the form of identity that we’re talking about. There are times we all have to mask. We all have to act like everything’s okay. You know, when I’m sick or hurting, I still have to mask in front of my kids. You know? Like what are they gonna do? It’s just gonna stress them out to a degree. So I’ll ask them if there are things that they can do, but I don’t tell them like, “hey, yeah, my back is miserable today,” because that’s just gonna stress them out and upset them. So like, there are times I still knowingly and regularly hide the chronic pain that I experience, or the anxiety, or the frustrations, or the ADHD symptoms, and the like, but when it is safe – and this is tied into that community thing – to just refuse to mask and to be as vulnerable as possible…

Vulnerability is terrifying – especially the first couple times. When I developed epilepsy in 2016 and when I came out of the hospital, like – they enacted my husband’s healthcare proxy status at that point. Like, I went into what’s called “status epilepticus”, which is where you start having a seizure and you stay there. And I was there for four or five hours.

Sarah Werner:
Oh, that’s horrifying.

Kate Wallinga:
And they just couldn’t figure out, and they still don’t know what caused it, but they couldn’t figure out how to stop it. And so there was real concern that I was not gonna come home from the ER, or at all. And when I did come home – right after a seizure, it’s like a hard reboot on a computer. And the systems come up a little at a time. And so the first couple of seconds they ask you, and it’s the weirdest experience, you know, if somebody says to you, “what’s your name?” You know it. It’s there. I know my name right away. And right after seizure, there’s a second when you know that you know it, but you don’t actually know it. So they’ll say to me, “what’s your name?” And I’ll go, “oh, it’s… Huh?” It’s just not there. It’s just like that “fill in the blank” is blank. And so, different systems come online, you know, the name and the fact that everything hurts. Those are awarenesses that come in pretty quickly. And then the other details sort of fill in where they’re going to.

I was in the hospital for, I think, four or five days after that. And when I came home, I was sitting on my couch and I recognized, you know, my older kids were there to sort of greet me and a friend came from out of town and I recognized her and I knew my husband, and that was fine. And my youngest, who we adopted in 2015, so the year before – she came running through the room. She’s three at the time. And I looked at my husband and I said, “who’s that?” And that was an experience that I didn’t admit for a long time, because you feel like a terrible mother. To be like, “not only did I forget that this child existed, but when I saw her, I didn’t recognize her. I didn’t know who she was. Like, I would’ve passed her on the street. Wouldn’t have known who she was.” And reaching a point where my fear that I’m this weird, freakish… the fear that I’m the only one got bigger and louder than my ability to mask and act like everything’s cool.

And so I got brave and admitted the memory problems and I still have a little bit of word aphasia – I never used to stutter. And now I do, and I struggle for the right word and that sort of thing. And I cannot substitute a word – it has to be the word I was looking for. And if I can’t find that word, then we just sit and I buffer. It’s the little circle going around and around on your phone as it loads. Like, that’s my brain until I find that word. So, all of those were things that I hadn’t admitted, even to those closest to me, maybe, especially to those closest to me, as sort of an act of protection. And finally the need to talk about it. And the courage to be vulnerable became necessities – because that fear that I’m this freak, and broken, and never gonna be acceptable, and no one will love me if they know this about me was like, “I can’t hide that. This is who I am, and this is what I am.” So… Blurt! Here we go.

And to have people listen and nod along and go, “I understand what you’re saying.” And to have people say, “yeah, same thing – I had that same thing,” has been world changing for me. And you start to learn like, “well, how do you cope with that?” And some people either don’t, or they cope in ways that are unhealthy, or their coping mechanisms don’t help, but other people have helped – have had ideas about, “well, I line my meds up here ,and I refuse to put my pants on in the morning until I’ve taken my meds. And that’s how I know.” And I was like, “that’s amazing because I have to take my epilepsy meds twice a day. And how do I remember once?” Because my short term memory gets squirrly, especially first thing in the morning. And so I get moving around and I’m like, “did I take my meds? Did I – wait? Am I wearing pants? I’m wearing pants. I check my meds. We’re good. Right.”

People like to use words like “just” and “should.” You know, “just smile more.” I call it, “people shoulding all over me,”

Sarah Werner:
Uh-huh <laugh>.

Kate Wallinga:
And one way that people would “should” all over me early on, after the brain injury became evident, was they would say, “well, just keep notes. Just write lists.” Because I used to function pretty well with a to-do list. And I learned relatively early on that I had lost that ability. I don’t know how to write a to-do list anymore. If I write a to-do list, item one is “write to-do list”, because that’s how literal life becomes on some levels. And then I don’t know how to stop. I will write things so granular, so tiny, that they’re obvious. “Take nighttime meds,” or “tell the kids to do chores.” Like, I’m always telling my kids to do chores. I do that more than I greet them, you know? So like, of course it’s gonna happen. I don’t need to write that down on a list. But I would write down these incredibly granular, obvious things. I would also get to the point where I was writing down projects that I was not gonna do for 5, 10, 15 years – “solve world hunger.” Like, these are things that I would write on these lists.

I would end up with pages and pages and it was borderline compulsive. Like we’re moving into OCD territory here. And comparably, My husband, he’s a math guy, and he’s very organized, and he likes things in their place. And I used to do that. And I think I probably used to like it. I don’t know. But now if I go into his office, I feel my stress rise. Because everything for him is stacked vertically. In some vertical piles and he knows what they are. You know, if they’re papers, he knows what they are. I need things organized horizontally, and he sees that as clutter. And it took me a long time to realize it’s not clutter. It’s just that my organization method is that if I can’t see it, it ceases to exist in my working memory. So I’m not cluttered. I’m not messy. I organize horizontally and learning to recast that, learning to talk to people and rephrase things in more positive ways – learning that that’s, that’s not a problem of mine. That’s a solution to the world.

The world likes vertical organization. The world likes lists. The fact that I can function with a few… Like for my podcast, I have a list of housekeeping questions that I ask – that’s written down. And it’s a list of 10 questions that I ask. It’s taped to my monitor. I use the same list. So I can function with lists, but I don’t add to it. I don’t change it. And I don’t change the order. And so I can function with long term lists, but I don’t do well with daily lists, and learning that that’s pretty common for ADHD was super helpful to realize. Like, I’m not that weird. I’m not that broken or rather, maybe I am broken, but that’s okay. That’s powerful, you know?

Sarah Werner:
It is. I wanna ask, how do you feel about the word “broken”?

Kate Wallinga:
I own it. I lean into it heavily. So there’s a Japanese art form called “kintsugi,” which is: if you break ceramic or certain forms of glass or pottery, they collect the pieces and they add gold leaf to the glue and glue it back together. And you may still be missing pieces here and there. And it may not function as a vessel in the same way that it used to, but that there’s beauty in the broken lines, and beauty, in the broken pieces. And I collect tattoos now, is one of my things. And so on my arm, I have a tattoo that I share with my oldest child who is an artist. And one of their favorite themes in their artwork is anatomy in different ways. So we have an anatomical heart, but with kintsugi lines through it, because it has been broken, but it’s been put back together.

Sarah Werner:
So many feelings right now. I don’t know if this is necessarily related, but how do you begin to fully accept yourself, gold leaf cracks and all?

Kate Wallinga:
Oh, I don’t know that I’ve fully done any of that. I talk a good game. It depends on the day. There are certain things that I lean into. The fact that I am more impulsive means I am more able to stay in the moment. The fact that I am more emotionally reactive means that I am more empathic and accessible, both to loved ones and I think strangers – I think that’s what makes my podcast work. It’s because I’m here with you. Like, I’m not reading off a bulleted list. I wouldn’t know how to write one in the first place. I’m not reading. I’m not focused on my page. I’m focused on what your story is. And one of my favorite things is when I have a guest who says, “I don’t know what I would talk about, I’m boring.” And I’m like, “yeah, just wave that red flag at me a little more,” but they do it all the time. And sometimes it’s people who are fairly well known, you know, or who have millions of downloads or who have published multiple books. And then the idea of being on what we call “a hot mic,” right? No script, no planning, freaks them out.

And I’m like, “cool. Good. That’s my job to make you feel comfortable and to make you feel calmer and to just let the story happen.” And that’s a powerful thing. A friend of mine came on kind of as a dare. We were in a group conversation, and they have a bunch of just really interesting hobbies: leather working, and home improvement things, and they raise animals… And it’s cottagecore in a lot of ways. And I was like, “you’d be a great guest.” And he started to do the, “I don’t know what I would say. I would be boring. I don’t know.” And another person who was in the chat reprimanded me: “well, he said no.” And I’m like, “well, first of all, you didn’t say no. Secondly, it’s not for you to step in on someone else’s behalf. Thirdly, no, I really want him on the show.” And so I contacted him afterwards and I wrote to them and I said, “look, you can say, ‘no,’ that’s cool, but I would love it if you were to come on the show and let’s find your story. You’ve got a story in there. And I promise that if it’s boring, I’ll delete it. But my job is to make it not boring.” And they said, “okay.”

And so they came on the show and I thought, if you had asked me prior, I would’ve said, we’re probably gonna talk about this person’s hobbies. And within the first five minutes, they mention that when they were in their thirties, they were diagnosed with autism and that it changed their world. They had always had it, but they had never been diagnosed before. And suddenly how they interacted in the world made more sense to them. Suddenly they didn’t feel that alone, freakish, messed up person. Suddenly there was an explanation and there was a vocabulary for it because there’s – I don’t like jargon – but there’s a power to having the right word for an experience. And he talked about that, and about how their only regret was that they didn’t have the diagnosis, the assessment process, earlier in life, because they wonder how long, how many hours, days, did I devote to thinking I was stupid, wrong, unemotional, bad – in some way, instead of thinking, “well, that’s just not how my brain is wired.” And so that all by itself was a powerful conversation to be a part of and to feel trusted with, but since then, I’ve gotten a dozen, maybe more DMs or e-mails saying, “that episode makes me interact with my child differently. Because I’ve heard that episode I made an appointment with a doctor.”

Sarah Werner:
Oh, wow.

Kate Wallinga:
“That episode has given me the realization that I’m not alone in feeling how I do.” Like, those sorts of things. There are moments that I have been still given the opportunity to change lives. And I don’t think you change lives by setting out to change them. I don’t think that’ll work. I think you change lives by acknowledging the life that you’re seeing and finding a way to recast it and see how it’s functional rather than how it’s dysfunctional, and how it matters. You know, and that alone, as a sort of side note, each of my episodes has a disclaimer and it’s, you know, pretty straightforward. You know, “this podcast is not appropriate for work, small children, or house plants. And I protect privacy and confidentiality when appropriate.” And I include the national suicide prevention lifeline number. And at the end of it, I use the phrase, “you matter.”

Kate Wallinga:
And I just used it because it seemed like it went with the flow of the rest of it, that all of it in its different ways – “I’m protecting confidentiality, and please call the lifeline, and think about your own needs before you listen to a given show,” all of those – “you matter.” “You matter.” And since then I’ve had people tell me that, over the course of their lives, they don’t hear that enough. They don’t say it enough. And now there are times where people will listen just to the end of the disclaimer, just to hear someone tell them, “you matter.” And because of that, I’ve started ending each episode with it as well, because there’s no such thing as hearing it too much. “Yeah. Maybe you’re broken. Maybe you are. Like, people break. And maybe you’re reaching a limit where you’re starting to doubt your own importance or functionality or relevance in the world. And all I can offer some days are the words that ‘you matter.’ And if you’re not hearing ’em from anybody around you let me know. And I’ll say ’em and I’ll scream ’em and I’ll use all caps if necessary.”

I say it to people a lot, because I just don’t feel like our society believes it or says it enough. And we think we need to focus on change and changing the other people. And it’s like, okay, that’s fine. If that’s your goal, that’s valid, but who and what you are right this second is enough.

Sarah Werner:
I know that you’ve said that to me on a number of occasions, and every time it’s been exactly what I needed to hear. And so Kate, you’re doing so many good and beautiful things.

Kate Wallinga:
It’s all because of this hobby. You know what I mean? Like it starts as this silly little hobby and I was fully prepared to drop it and move on to the next thing. I still, you know, the eight year old me still wants to write someday, and I’m gonna try, I’ve committed to trying with this podcast and you know, the second one. So I’ve made verbal commitments that I’m at least gonna try to do this, but even if I don’t, I haven’t lost everything about who and what I am. You know, there are parts of me that are still pre-2010 Kate. It’s just about letting me be whatever it is that I am, rather than trying to always fit there. I think in our culture, especially women, we’re not supposed to say, “yeah, you know what, I’m doing a good thing.”

Sarah Werner:
Mm-hmm.

Kate Wallinga:
I’m impacting people in a positive way, and that’s real and important. But I am, and it is. Yeah. And so are you. And it is, it does matter. And I just don’t have time to placate people and make stuff up. If I look at somebody’s brand new baby, and I’m like, “that is not a pretty baby.” Like not all babies are pretty, like, let’s be real. That’s when you look at it and you say, “Ooh! He looks smart.”

Sarah Werner:
<laugh>

Kate Wallinga:
You know what I mean? Like, perhaps honest and straightforward to a fault. So if I say to somebody, “you matter,” it’s because you do. And I know things. This is a hill I’ll die on is that: who and what I am is important. Who and what you are is important. And anybody who’s listening, they have a story. They may not be willing to tell it. They may not be able to tell it. They may not have found the way to tell it yet, but it’s worth telling.

Sarah Werner:
That is such a beautiful sentiment. And I’m torn between wanting to end the episode with that and wanting to ask you one more question.

Kate Wallinga:
You can always delete stuff.

Sarah Werner:
That’s true. That’s true. Okay.

Kate Wallinga:
The beauty of audio editing is if you asked something and I’m like, “oh, well, here’s the felony I committed last week.” Then maybe cut that out.

Sarah Werner:
I would cut that out. I would cut that out. <laugh> We talked a little bit about anxiety and chronic pain and kind of masking through that. And I’m curious: on the days when you are in pain, on days that are really, really difficult, How do you keep going? How do you do anything? How do you keep creating?

Kate Wallinga:
Well, for one, I don’t. I don’t force that. When I set out, when I started my show – initially, it was just an inclination of: I’m not gonna have a release date. Like they, the experts, whoever they are, say that you should release regularly and frequently on a given day of the week, or whatever. And I was like, “I’m not gonna do that. I don’t do especially well with deadlines.” And I proved it because my, I think seventh episode is one of my first collaborations. And this is back when, like my show started very “true crime” and then drifted. And so this was still very true crime in nature, and I was collaborating with another podcast and they were hardcore about, “we release at midnight Central time on Wednesdays.” And so I was like, “okay.” This was not a case of the two of us releasing the same audio on each feed. It was a case of, they released one part of the conversation and I released like a companion conversation. And so it was important to all of us, but perhaps more to them, about “we wanna release at the same time. And we really wanna push audience toward me and I’ll push audience back.” And so it all made sense. And it was my first time editing a three-person conversation. And, you know, seven episodes in, you don’t know what you’re doing.

Sarah Werner:
That would terrify me.

Kate Wallinga:
You know, also I’m deaf. I hear about 25% of normal. So I edit visually. And so the whole process is slow. I’ve figured out how to do it now.

Sarah Werner:
Oh my gosh.

Kate Wallinga:
But then I couldn’t distinguish their voices… Whatever. So, the moral is I pushed, and I pushed, and I pushed so hard in the days leading up to that episode to try to release it on time. And I literally hit publish, went upstairs, shook my husband awake and had a seizure.

Sarah Werner:
Oh my gosh.

Kate Wallinga:
Because I stressed myself out so much because of this. And, you know, by not getting enough sleep, but also just the anxiety and whatever. And I’ve always been a person who – I can push through the crisis… And then the crisis fades and my brain says, “okay, let’s nap, migraine, throw up somehow. You know, apparently now sieze, that’s the thing we’re gonna do now. That’s our new trick.” And that was my very clear message of, “I am never gonna set a hard and fast deadline again.” And so there are weeks where I’ve released 2, 3, 4 episodes in a week. There are other weeks where I’ve gone, you know, two or three weeks without releasing, giving myself the leeway. A huge trick that I’ve learned since starting the podcast that has been tremendously helpful is that a feature of ADHD is like I said, that difficulty in starting a project unless, you know, you’re gonna finish.

And so I have had to learn to very deliberately and specifically talk myself through saying, “all I’m going to do, is go downstairs stairs and turn on my computer. And if I get down there and I don’t feel well, I’m gonna turn and walk away.” It’s giving myself explicit, stated permission that the task is not to release an episode today. The task is to turn my computer on. So, another way that I used to look at it in terms of “time” is: the more anxious or depressed that I get, and I’ve gone through both different times, the harder it is for me to think down the road. Like, when we first got together, my husband and I were planners. We had a 5 year, 10 year plan. You know, isn’t that a cute idea? And then after I got sick in 2010, it got to the point I called them “brain measles” – just the noise and the chatter, and sometimes it’s “the nothing”. Like I don’t have an internal monologue, I just have silence. But sometimes that silence is, sort of, literally deafening. And my husband would come to me at 3 and say, “what would you like for dinner?” And I would be like, “I can’t think that far ahead. I can’t handle it. I have to pull my horizon in very close.” And sometimes the horizon is so close that it’s: “I’m just gonna take another breath right now. And then I’ll figure out the one after that.” And that’s an extension I think of learning to say, “it’s okay to come down and just turn my computer on. And if I get here and it’s too much, I can go back upstairs and that’s not a failure.” And that’s how you get through.

And so, there are certain things, you know: you have to drive the kids to appointments or whatever. There are certain things that are time limited and you don’t have choices over. And so that’s when, “okay, I know I have to do a thing, so I’m not gonna add extras today. I’m having a hard day. I’m not gonna add extras. I’m going to literally sit in bed, and read, or knit, or play games on my phone, or whatever.” And that is my plan. If I can convince myself not to do the extras, that is the success for the day, so that then I can get the kid to the appointment, or myself to the appointment, or whatever, and look at it as, “that’s what I accomplished.”

And I don’t do it anymore, but this other, last sort of trick that helped a lot early on, when people kept telling me, “make lists, make lists,” was I stopped writing them in the morning. I stopped writing, “what am I going to do today?” Because I would be so fixated at the end of the day by the things I hadn’t accomplished that day, that I wouldn’t be able to forgive myself. And I would then, sort of, revenge insomnia through the night. You know? Even though I wasn’t accomplishing anymore, I just wouldn’t let myself sleep. So instead I kept the same sort of journal-type thing at the side of my bed. And when needed, when the brain weasels were really loud about how pathetic and broken and useless I had been on a given day, is I would pull out this journal and I would write down the things that I had done that day. No, such thing as too small. It was worth writing down if I got up and got dressed. It was worth writing down if I used the bathroom when I needed to, instead of putting it off. It was worth writing down that I sent a text or that I didn’t respond to some jerk on Twitter.

Like, all of the things. And you end up with a list and you realize looking at it, “I have a tangible record that I did stuff today.” And that helped a lot. And I still did stuff. I still ate. And I still boshed the kids around – you know, whatever the things, you know, we all have our hobbies – and that helped a lot. Sometime in the 2014 to 2018 range in there, in between when I went on disability and started the podcast, that’s when I would do that regularly. And eventually I just sort of stopped needing to, because I had convinced myself like, no, “I am functioning.”

Sarah Werner:
Yeah. “I am functioning and I am not failing.” It’s so easy to get in a very black and white sense of, “well, either you did all the things or you are a failure.” I love the idea of writing down what you’ve done. It seems so simple, but it feels also extremely revolutionary.

Kate Wallinga:
It feels profound. And, and one of the things that I would do then, and I still do this now, is if I get to the end of the day and I feel like, “today’s kind of a wash,” like I really didn’t get enough done. That is when I will go through my contacts list on my phone, or Twitter, or Discord, or Facebook – whatever. And I will pick some number of people, not a ton – I will set a cap on it, so I’m not up all night doing it, but I send some number of people a very quick, “hey, I just saw your profile pic.” Or, “I just saw this post that you made. Thinking about you. Or, “hey, you matter. Hey, you’re important to me.” Not with the goal of getting a response, but with the goal of telling my brain measles: “I connected with people today. I made even a small impact on someone else’s life today. And that’s enough”

Sarah Werner:
Kate. You are absolutely one of my favorite people. I fricking love you so much. This has been just beautiful. Thank you so much for your time, and your insight, and your words, and for everything that you do for everyone. I wanna ask: where can people find you, where can they find your show? I know that there’s gonna be a lot of people who will wanna connect with you.

Kate Wallinga:
And they’re welcome to do it! I’m most often on Twitter, although I don’t post a ton just lately ’cause of the whole doom scrolling thing- that makes the brain weasels scream. But so I’m @IWBpodcast on Twitter. I have a Facebook page. I’m on Instagram, although I hate Instagram with a hate that is more than heat. So I’m only there resentfully. But you know, I’m online a fair amount. I will often go dark in terms of public posting, but I’m still around. I have a Discord server. So it’s sort of wherever people wanna find me and feel comfortable with that. I’m on, I think all of the major podcast players. I should be, by 400 episodes, I hope so.

Sarah Werner:
Oh gosh. Yeah. Yeah. I’m going to make sure that I include links to all of these in the show notes for today’s episode. I just wanna thank you. There’s just something about you that really shines, and that I think helps other people feel seen, and helps them see themselves. And that’s just a really beautiful thing that you do. So everyone make sure that you are listening to Ignorance Was Bliss. Again, there will be a link to that in the show notes for today’s episode, over at SarahWerner.com. And Kate? Just… Thank you.

Kate Wallinga:
You matter.