We pathologize things and we narrate things as like good things or bad things and pain is a bad thing.
But like by narrating it as bad, we disallow ourselves from like just letting it be.
Just letting it be there.
The pain is not forever.
Just like nothing is forever.
And like maybe it'll get worse, but maybe it'll get better.
And that maybe that little bit of like possibility that like, or maybe I'll just get better at letting it be.
And that's the thing that happened.
I got better at letting it be.
And it's like, it just feels like magic.
So have you ever felt like you were carrying around an invisible weight pain, discomfort or struggle that no one else could see?
Something that made even the simplest daily tasks feel overwhelming at times.
For many of us, the experience of invisible pain, it's all too familiar.
Yet it often goes unspoken.
We put on a brave face and power through hiding our suffering from the world.
What if there was another way, a path to make that invisible pain more visible, even if just to yourself or to those closest to you, or a way to navigate it and experience it with more ease, even if no one else knew what you were moving through.
My guest today is also a dear friend, Samira Rajavi.
She is a PhD in researcher in media studies with a specialty in trauma, digital media and meaning making.
A professor and author of the award-winning book, All My Friends Live in My Computer, Trauma, Tactical Media and Meaning.
And she's also a public speaker who helps others find a lot of light and life's darkest moments.
But here's the other part of Samira's story.
The one you won't often see, she has been walking a path of chronic pain, debilitating headaches and an eventual diagnosis of a benign brain tumor that's led to multiple surgeries hearing loss in a range of physical pain that exists to this day.
All invisible to the unknowing eye.
And yet it's a part of her existence, something she dances with every day, even as she raises a young daughter, teaches her students, speaks, conduct research and rights.
In today's deeply vulnerable and real conversation, we explore what it's like to live with invisible pain.
How and why to maybe make the invisible visible.
We talk about embracing the uncertainties of life and finding presence even in the midst of persistent pain.
Samira opens up about the pressures that often come to appear high functioning, despite a lot of inner turmoil and suffering.
And how she's consciously created spaces for herself and for others to show up as their full authentic selves and to stop hiding struggles and all.
And I share a bit of my own journey with my own invisible pain along the way.
So get ready to explore what it really means to live a good life when invisible pain is a part of your daily reality.
So excited to share this conversation with you.
I'm Jonathan Fields, and this is Good Life Budget.
Hey, I'm Ryan Reynolds.
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You and I first met years ago at this point.
And we were actually out in Boulder, I think living in New York back then, traveled out here, recorpsing conversations.
I had caught you on the TEDx stage in Boulder, I think a couple years earlier.
It was kind of mesmerized and blown away by you and your story.
And wanted to go deeper with you.
And we have since become good friends.
And we were talking recently.
And about this experience, and I think so many people have.
Especially as you, if you're fortunate enough to sort of like move into more seasons of your life, we go through changes.
And some of those changes are awesome.
And some of those changes also they hit us in different ways.
And I was recently having a conversation, actually with Sean Mackey, who's one of the head pain researchers at Stanford, who's also like now, one of our recent guests on the podcast.
And we went into a lot of the ideas around pain, what it is, what is this circuitry of pain, what's the psychology around pain, what happens in the body.
And also this sort of a, I guess what he would describe is a multi-modal approach to it.
And the conversation I think was really valuable to me in understanding it, because you know, like at my age in this season of life, I feel it.
And really understanding what's going on, what's not going on, and how to think about it.
But there was this sort of question that there was a thought bubble that was building in my mind, as we were having the conversation, that I never got around to asking.
And it's something you and I've talked about a little bit.
But it's also something that I know that you have had a lot of experience, really trying to understand and navigate and walk through on a day-to-day basis.
And that's this experience that I also would imagine.
A lot of our listeners deal with on a daily basis too.
And it's this notion of, I don't know exactly how to describe it, other than calling it something like this experience of discomfort, inner minds, inner bodies, hearts and soul, sometimes all at once, that we feel maybe on a chronic level.
Maybe it, you know, it varies on a day-to-day basis.
But it's pain that we feel that is not observable from the outside end.
And maybe in part because we keep it from being observable from the outside end.
And that's probably a part of the conversation like we're going to want to have.
And I've been thinking about it more and more and how prevalent this is.
And when I start to just ask friends about it, they're like, oh yeah, me too, me too.
And like, but we never talk about it.
We never go there. We never understand like, what are you living with?
What are you living through?
What are you walking with?
And what's really going on?
And I think because of that also, we never share both the experience of it.
We also never share how we move with it.
So we were talking about this recently.
We said, let's have an open conversation about this.
Because this has been a real part of your life experience for a solid chunk of years now.
So before we kind of get into the details of that, I think it would be really helpful for you to share if you're okay.
The story of what you've been navigating for the last five, six, seven, eight years.
And how it's changed you.
Yeah, it's a, it maybe even starts a little bit before that.
Because thinking about pain, especially physical pain, which as we know walks alongside the emotional spiritual other pain, I started feeling it really routinely when I was about 15 or 16.
Oh, wow. In what they thought at the time were migraines.
And so they diagnosed me with migraines and gave me medications for migraines.
And I'd gotten an MRI at the time.
And what we found out 10 years later was that the brain tumor that I ended up getting treated for, which was a benign brain tumor that grew up.
My hearing and balance nerves was there.
It was just small and it was missed.
And so that's probably what was causing the nerves to misfire and cause all this pain.
And so that's why the treatments weren't working.
And that's why every day around 2 p.m.
in French class when my nerves would start to get taxed from listening and balancing and moving through the world, trying to act like I wasn't feeling a little wonky, I would just come down with these like debilitating headaches.
And my teachers knew and they would let me put my head down on the desk or go to the nurse's office.
So it started when I was young, but I didn't understand it.
So I just learned to medicalize it really efficiently to throw more medicines at it, to try to solve it, to try to fix it rather than try to figure out the problems were to either solve them or learn how to kind of like cohere with them and live with them.
So fast forward 10 years later, I was 26.
I fell down on my way to class.
I was in grad school and literally thought someone shoved me, turned around ready to like throw punches.
I was like, and you are. And then ended up getting an MRI, getting all these tests done, finding out that I did have like a pretty large at that point, tumor and ended up getting surgery.
I had 10 craniotomy's in the next four years.
So I had spinal fluid leaks.
That was chronic. They're not even sure if they fixed it now, but we've just decided like, that's fine.
We're gonna stop cutting my head open and lived with really severe chronic pain probably until about two and a half years ago.
And now it's still chronic, but less severe.
So I've lived with physical pain and alongside that comes anxiety and stress and all of these other things.
And you know, it's chicken and the egg.
What's causing what at any moment?
We're not really sure. But that's kind of my pain history, right?
As I remember when we first started batting around the idea of having this conversation, it was funny because it was a text thread.
And it felt like you were pretty lit up about actually like, can we have this conversation in the public way?
Because of what you've been through, it's taken a lot of both bandwidth, but also you've had years now to really explore like, what is this?
What is it? How does it affect me?
And what do we do with this?
Which is I think unusual.
Yeah, I think I am lit up about it because one of my favorite disability scholars is this person, Simi Linton.
And they say that the disabled body is asked to be, I'll never forget these two words that they use, plucky and resolute, right?
Plucky and resolute. And I think I'm just so tired.
And some days when I think about like what I'm exhausted about at the end of the day, it's not the work.
It's not taking care of my 15 month old.
It's not taking care of graduate students at work.
It's not the writing. It's holding it together to perform like I'm fine the whole day through being plucky and resolute.
Even when I'm somebody who doesn't really believe we need to do that, we do it all the time.
And so I am lit up about it because even just before we started recording, when we asked each other how we're doing for both a get or good, good, fine, right?
Where it's like, why aren't we why aren't we saying like I'm working on good?
I want to tell you that I'm good, but like I woke up and my shoulders were glued to my ears and they were tense and crunchy in my bones and it made me feel sad, but I'm so glad to be here with you anyway.
Yeah, it's such an important conversation that we just don't normally have.
I want to round back to certainly your story and explore these ideas more, but I'm also curious because as you mentioned, so you teach at the university.
And mostly grad students from one of the remember, but you've been teaching for like enough time now.
And you've also seen sort of like how students have navigated the last chunk of years in this.
What are you seeing showing up in sort of a younger generation around these experiences?
You know, I see a myth. I had the privilege of teaching all of our freshmen at our media college right after COVID.
And so that's 300 students.
So you don't often get to know a lot, but the ones you do get to know are the ones that either come to you and say like, I have these things going on in my life and I need accommodation.
So here's my letter and here's the support I need and they're super open about it and they're super comfortable with themselves and what they need.
And then on the flip side, the ones you meet are the ones that are trying to perform past any kind of helper support that they need.
And when you actually get through to them and start talking to them, you realize that they're deeply anxious about showing any kind of weakness.
And so we are seeing like a little bit of a shift in people being more comfortable, but we're also seeing this sort of quick return back to hiding away any kind of weakness or illness or sickness or disability or need for help.
That's just causing people to be super anxious.
I had a student come to me and say, hey, I I'm a soccer player and I got hit really hard in a game and I have a concussion.
And she was in person talking to me at the beginning of class.
And I was like, why are you here?
Yeah, what are you doing?
Why are we? Why are we having this conversation face to face?
I didn't want you to think that I was bad.
Not a bad student, not a lazy student, not all of these things we might describe to that.
I just didn't want you to think I was bad.
And I was like, why would I think that you're bad for taking care of yourself?
Well, because you know, you calculate attendance.
And I was like, I mean, kind of, but not for what?
No, we don't let ourselves be human.
We feel like we have to be these endless productivity machines.
And like, I was like, go home.
And she, with tears in her eyes, she was shaking.
She's like, but I can't.
I'm a good student. And I was like, I'm not sending you home because you're a bad student.
I'm sending you home because you're a beautiful person that deserves to rest when your body is asking for rest.
And that conversation for me has stuck with me because it's like even in a generation that's so much better about bodily self-awareness and care.
We are seeing students come up and say like, my value is based on how I show up and how I perform.
And so even when something legitimate has taken my ability to do that, I refuse to let that show.
And I just want people to like, be in the space.
You're not going to learn anything if you're sitting there with a concussion anyway.
Like, live your best version of yourself when you are able.
Yeah. Where do you think that this, this standard and you're describing it in the context of, you know, like as undergrad student in college, the reality is like, we all still have it.
There are very few people that I know have sort of like fully embraced this notion that like, oh, I get to rest when I need to rest and they get to take care of myself when they need to take care of myself.
We still perpetually show up.
And I would imagine that she just gets worse and worse as most of us progress their life because then you pile on, it's not just that quote, I want to be a good student.
I want to be good parent.
I want to be a good employee.
I want to be a good leader.
I want to, I'm rising up the ladder of whatever this vision of success that I had, you know, like, described for myself earlier in life is or was handed down to me like, this is the, the path.
So it's almost like the stakes keep raising higher and higher.
And as much as you can tell somebody, it's okay to take care of yourself.
It's okay to be the way you need to be and also share that experience when needed because part of the way we take care of ourselves.
We still don't like it. And you're describing this in a young student.
I would imagine we could have a version of that exact same conversation with people we know in there 30s, 40, 50s, 60s, 70s.
It persists like just on and on and on.
What do you think that's about?
I think it's about so many things.
I think one of the things is I think are fear that we will get left behind kind of like this.
One of my favorite, she's a feminist disability scholar is named Rosemary Garland Thompson.
And she says that one of the reasons we fear disability so much is because it's something that's going to eventually happen to all of us.
And it's also something that reminds us of our mortality and our kind of like fallibility as humans.
And I think we're afraid to get left behind, to get left out, to be ignored, to be less than.
I think it's also kind of this like churn of late stage capitalism.
We've learned to equate our value as people into how much we do, how much we accumulate, how much we produce, how efficient and effective we are at doing all of that.
I'm really good at telling my grad students, especially to put boundaries on the work and go home and rest.
And I'm okay at that in theory, right?
I don't work when my spouse is not working.
I make sure to be super present with my kid.
But when I put her down to bed, I usually met with two options, right?
Rest or clean the kitchen and vacuum the house and do all the dishes and make everything perfect and pristine and get everything ready.
And don't ask for any help doing it.
And I usually pick that one.
And then if I don't, I have found myself asking my spouse, like, am I?
Am I bad? Like literally?
Am I a bad mom? Am I a bad spouse?
Am I? And he's like, what are you talking about?
You're always telling everybody to rest and relax.
But it's so ingrained in me this idea that like, to be good, we have to be doing good for others at all times and producing and successful and financially stable.
And it's so much pressure that something that might make us feel weak or scared or vulnerable like pain, we're not going to share that because that's just going to get us cast aside.
And we don't want to be cast aside.
Now that makes so much sense.
You've used the word disability a couple of times and referenced a number of disability scholars.
The question in my mind.
And I don't know if this is sort of like generally accepted.
Do you see as being falling sort of like under that umbrella of disability?
I for sure do. And I think we all should because I think one, it helps us understand that disability isn't a thing out there that happens to these kind of non-normal bodies that disabilities part of our continuum of what it is to be human.
And we should stop seeing like normal bodies and disabled bodies and things that remove us from this ability to hold on to that construct of normal are disabilities.
But rather than thinking about what that might foreclose on for us, like what might that enable for us and understanding ourselves and our humanity and our vulnerability and our ability to understand that other people's kind of unique bodily experiences.
So for me, there's kind of like an important politics to it.
But it's also about recognizing that like, normals this made up trumped up idea that we all were told at some point in our life that we ought to try to grapple towards.
But like really that's never been real.
It almost creates in like a quote in an out group.
Like there's if there's a clear divide.
It also creates a I don't want to use the phrase, but it's like I think it's the patterning that we have like the aspirational group.
I'm like, you know, like that what that capital N normal is the group that you should ascribe to be a part of, whereas like what you're describing is actually now like we all fall along a spectrum, the ability and disability and that spectrum, we're going to like we're going to dance along all different parts of that for the entirety of our lives.
Some people in very different ways at different times.
But at some point if you're fortunate enough to live long enough, you're going to find yourself sort of like increasingly on one side of it.
It's just the way things are like that's life.
And rather than saying, I've hit that point or across the threshold and now I'm quote like disabled, what if we just looked at it as we're all living in our bodies doing the best we can.
And that's actually okay.
It is interesting. I think people have such a wonky and uncomfortable feelings around the word and the notion.
But it's you know, it's important.
I think to just have conversations like this around it.
Yeah. And I think it's important to actually like not shy away from it, right?
Like not shy away from the language of it even.
Like when they first told me about my that I would probably lose the hearing in my right ear, which I'm now completely deaf in my right ear, right?
And they kind of use the language of disability.
I found my whole family kind of bristle like, oh she's not disabled.
Look at her. She's fine.
She's perfectly normal.
No one will ever know. She'll move through the world.
She'll be fine. And I had this moment where I was like, oh maybe I won't be, right?
But maybe that's fine. Maybe that's what has to be fine, right?
Like one of the things I came up against when I first got sick was that not only did I want to get better, I wanted to like have this like super human response to it.
And then I learned that there's actually a name for that, right?
Like when somebody is crippled either physically, emotionally, mentally through illness and then wants to overcome it, not only are you being asked by society, by yourself, by your own kind of constructs you've bought into to overcome it and go back to normal, but then overcome even that normalcy.
And they call it the super grip, right?
Like I didn't want to just get better.
I decided like I literally googled after I got sick.
I'm in the hospital bed googling hardest to work out on planet.
That's what I googled. And it was like CrossFit.
And I was like, all right, I'm a CrossFit or I and the doctor comes in and I was like, all right, when am I clear to exercise?
And he's like six weeks, six weeks and one day I was in a CrossFit gym.
Was it a mistake? Yes, it was.
I got hurt, I got more surgery.
But what I was trying to do was be this supercrip to overcome not just the illness that made me feel vulnerable, but any kind of question that I might not be absolutely amazing in every way, rather than recognizing that like, wow, my experience and my ability to cohere with it and the way I navigated it and the grace I brought to myself and my family through it.
And the way I learned with it, that's what's incredible.
It's not being more normal or like super extra normal.
I don't know. It was like a weird thing to do, but it was just empty in the end.
I would imagine it's a pretty, it's probably not an atypical response also.
And we'll be right back after a word from our sponsors.
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This is interesting. You mentioned your family's part of their response was no one will ever see it.
Which brings us back to the conversation around invisibility.
Whether it's disability, pain as a subset of that, I wonder if there is a qualitative difference between something that is where you move through life and it's observable by other people.
You don't have to announce it.
You don't have to describe it.
You don't have to say, Hey, this is what's going on with me.
People may still, it may cause a whole bunch of like series of additional other challenges or social issues and things like that versus when you know internally you're living with something.
You're moving through each day with something.
But unless you tell somebody, they'll have no idea.
When I was a kid, I was a gymnast.
I was a competitive gymnast.
And I've had learned later in life that there are things in my body that tend me towards inflammation and towards chronic pain, especially in it's shown up in my joints for more or less my whole life.
I also trained as a competitive gymnast until I was about 20 years old year round about the worst thing I could have been doing for the way that my body is stacked.
So I was in pain nonstop.
And it got to the point where my wrists were often so painful.
But if you looked at me walking down the hall, it was a great shape.
I was a gymnast. I was like, you would never know unless I said anything, but it was weighing so heavily on me.
I knew I was in pain. I know it was carrying this.
That it's funny. This certainly just popped into my head.
I started wearing, I started wrapping my wrists with ace bandages during the day.
So that because I couldn't figure out as a kid had a handle the internal and like the conversation and I kind of wanted people to know I was in pain.
But I didn't want to go up to them and say, Hey, I'm in pain.
So I used this sort of like mechanism to make this invisible pain observable to others and they'd be like, Hey, what'd you do?
Did you hurt yourself? Yeah, like a gymnast like just like blah, blah, blah, whatever it is.
There was a part of my body that was almost perpetually taped or wrapped like almost every day when I was a kid.
And in hindsight, I've like, I realized I'm like, I don't really need the structural support of those things.
What I was really doing was trying to figure out how to make this thing that I was carrying internally observable in a way that I could somehow tell people I'm suffering without having to tell them I'm suffering.
And this is one of my teens.
You know, I didn't have, I'm still working on the skills to be able to handle that now in my 50s as completely unequipped.
And I was just trying to make up mechanisms because there's something in this and I want people to know and I don't know how to handle this.
I don't even know what the conversation is after they do.
But maybe it'll at least resolve some tension or create some compassion or something so that I don't have to go around telling people what's happening inside of me how I'm suffering.
And what's interesting is later in life, even though I've like, I carry pain in different ways, you know, it is entirely invisible to pretty much everybody except close friends if I share what what I'm going through at the moment.
So I've almost backed away from the mechanisms of being able to create an opportunity to share this with people.
I mean, as a kid, right, it's lonely to be in pain.
It's really, really lonely to be in pain.
And when we're younger, I feel like we still are okay wanting people to take care of us and like into it what we need.
And that's what you did.
You gave people a cue to like be able to into it what you might need.
And then as we grow up, we feel less and less able to be like, Hey, someone take care of me.
Like someone ask me if I'm okay.
I did the same thing in my 20s and 30s with my pain.
I would start caring ice packs around.
And gingerly placing them on my head so that someone would be like, are you okay?
So I'd be like, I'm not okay.
Thank you for asking because I felt so alone in it.
But you don't want to be the person that like breaks the rhythm of the meeting or the day or the coffee meetup by saying like, oh, hey, I'm in really horrible pain, but I'm still going to try to be here with you.
Because suddenly that shifts everybody's reaction to you.
And they worry in a way that like we're we don't learn a language of care really in our culture.
And so people do their best, but they end up making you feel at a place.
And like it used to make me want to remove myself from situations.
I was in a Zoom meeting once with colleagues.
I've worked with for a really long time, right?
Colleagues and friends.
And I got a horrible headache.
And I could feel it kind of like inching up my neck.
And I was kind of grabbing my neck and stretching a little bit.
And it was a camera's on meeting.
This was like height of COVID, right?
And so I didn't feel like I could turn my camera off.
And so I tried to slightly below the camera, like get medication out and like secretly take the medication without anybody seeing my mouth move and all of this stuff when in reality as someone who studies this stuff and teaches this stuff, I could have said, hey, can we take a pause?
I'm in a lot of pain. And I need to address it really quick.
And I'll be right back. Right?
But I couldn't even figure out the language to do it now.
I mean, we do this to ourselves and our kids like our culture from a really young age.
I see it with my daughter, Josephine all the time when she cries the first impulse even in me.
But in grandparents and friends, it's like, oh, don't cry.
And I have to catch it. And I say like, oh, no, cry as loud as you want.
Let me know how you feel.
Figure out how to tell me.
Tell me you're mad. Be mad.
Get mad. Be sad. Feel that.
That's a real feeling. We got to feel that.
And I feel like our inability to cohere with that discomfort of like another person being sad or sick or unwell gets translated in our desire to sort of like hide it away.
But sometimes it's too severe.
Like that suffering creates a rupture in us.
And so we do cue people like, hey, this ice pack, this ace bandage, this is my way of being like, hey, can you please see me in my actual experience?
Not the way like we feel forced to see each other all this time.
Yeah. I mean, you bring up another really interesting point, which isn't in a professional context.
I feel like this really gets like layered because if we were suffering, maybe it's a migraine, maybe there's some other chronic pain that you're just like this is a part of your daily experience.
And it's not that we don't want people to know.
I mean, maybe they're, I think for some, there's a perception that everything about us is being judged.
And if somebody knows that we're carrying this thing, there's a potential perception of quote, not being up to the job or being weak or if you know, it's a tough job with long hours and we're all on deadline, you're not up for it.
You're not capable of it.
You don't have the stuff that you need to have in order to not just do this job or this project, but then progress further and further and further.
And the reality is that may be true, not that you don't have the stuff, maybe you don't in a particular roller job or culture, but there also may be that perception, like that thing that you're concerned about.
People may actually be layering that onto you if they start to see like, oh, it's got a constant headache or just this pain seems to really make it so that he can only work for you know, like a couple hours at a time and then you need to take a break and part of it is this concern that's in our head that maybe partially is fabricated, but it's also probably partially real.
Yeah, I for a long time at work was the, I mean, they wouldn't call me this, but I knew I was like the brain tumor girl.
I think I was the person with the brain tumor.
It's what I talked about.
It's what took up my time.
It's what I had to deal with.
Did I do a whole host of other really incredible work in between all my brain surgeries?
Totally. Is that what people saw?
Not really. And I had to work really hard to undo that perception of me to show that like, that's one thing, right?
I'm many things, but I have kind of a luxury and a privilege that in the kind of job I have, I can forefront it in a particular way and not lose my job.
I still have to deal with people's perception of me, which like I've talked to you about this.
I've asked your advice about it.
It's not always great and they're not always kind about it and they're not always supportive about it, right?
So knowing that I have to stomach that, I still make the choice to go into my classrooms and with my grad students and with my students to be like, hey, here's the whole host of things I bring to the table that makes being here in this space really challenging for me.
But the reason I'm sharing it with you is because I want to offer you a space where you can be your actual self and not make you think that the best version of yourself has to be the version of yourself that hides who you really are.
Like in my grad class this last semester, we did check-ins at the beginning of class.
Just a few minutes to tell each other how you're doing, what's going on, who you are so that we're not just coming into the space pretending that we're all just like little research robots.
We are going to first come in as people and recognize that people have a lot of things that happen in their life that bring them in and out of the space, physically, emotionally, spiritually.
And then we're going to let that sit in the space for a minute and then go into the content.
And yeah, it took like 30 to 40 minutes some days at the beginning of class.
It's a two and a half hour class worth it.
I think we learned better because then the students felt able to do their best work.
So in me sort of like for-fronting my vulnerabilities, even though on sort of like the administrative institutional end, it's caused me to be looked at in a way that has caused me a lot of harm and caused me a lot of pain.
I'm still choosing to make that choice to create a shift in the culture that I can control the culture of my classroom so that people might feel safe to let their guard down for a second because I think we do better work when we feel safe and valued and whole.
And we can't do that when we're hiding pain when we're hiding the things that are occupying our mind and pretending that we can just like my mom, for example, one day I came into class and she had gotten a PET scan and an MRI of her brain.
She has chronic breast cancer, like a chronic breast cancer has to stay on her treatment every three weeks for hopefully many, many years.
But the scans are really scary and it's spread to her brain and it's scary.
It's catch the breath from your throat, scary.
And I had to go teach a class and I knew I had to go teach a class and I wasn't going to cancel the class because what was I going to do?
Spend my wheels at home.
That's not going to be better.
But I went in there and I was like, hey, today I'm dealing with a lot of hard.
So like if you're dealing with hard, you can share it here.
You don't have to. If you're dealing with joy, you can share it here, but you don't have to.
But I just want you to know where I'm at so that we can walk forward from this common ground.
That makes so much sense.
The experience of making the invisible visible in these contexts, it's scary, I think, in a lot of different ways.
And we're not taught about this.
We don't have the skills.
We don't have the language because we never have this conversation.
Even though like literally the experience of disability or pain is going to be a part of all of our lives at some point, whether chronic, whether it's just really in moments and making that invisible experience visible, I mean, the way you're describing it also, like as you step up and you say, like, you know what, I actually, as somebody who's convening a space, convening a group, and I'm asking them to show up and be their best selves and do the best work to the extent that they can on this given moment in time, that me sharing where I'm at, what I'm going through, in a way that is honest, but also safe for them.
And I think that's a really delicate and hard thing to often do in any kind of leadership we're parenting or in contexts like that.
It makes it better for both for you and also for them.
And then giving them permission and saying, hey, listen, if there are 25 people sitting in a room right now, like there are a whole bunch of things that nobody else in this room can see that are going on with you and that is causing some level pain or suffering.
It may have been the diagnosis of a friend or family member, maybe something going on with you personally, whatever, it may be the world.
And to the extent that we can make that invisible experience visible in the context of safety and normalize it, it's good not just for the individuals, but for the collective.
And yet we're so terrified of doing it.
The way that you just described it, imagine if leaders and organizations did this on a regular basis, but is so counterculture to what like, adulting, especially adult careering has always been described as that, who's going to show up and start doing that within the context of an organization.
Like you're doing it within your organization, your professor and researcher, and you're also, you work for a big institution.
And like you said, it creates a great context in the room.
And at the same time, there are things.
There are other like ripples of harm that you've experienced because of it, because it makes you really different within the context of larger institution.
It's so hard to do that balance.
It is really hard. And it's really risky.
And I know that I actually risk my livelihood sometimes with the way that I move through the world, but I'm so invested in it because sort of the assumption is that like the people that aren't saying it aren't experiencing it, but like you just said, everybody's experiencing something, right?
Like just because someone is a polished CEO and a fancy student always, you know, that has like the twinkly smile and efficient meetings.
Doesn't mean that they don't have a whole world and a whole life and a real human body that they exist in.
And I think the safety is the key part, right?
Letting people know that like, there won't be a consequence to you for being honest in this space.
We're respectful. We're caring.
We're compassionate. We respect the boundaries of the type of space that we're in when we choose to share, but we still share honestly, right?
And like I had a grad student who had some wild stuff happen in their family and they just weren't in the space.
They were physically there, but they were not there.
And finally, I was like, look, you should go.
You should go home. And their immediate knee jerk response, even after dealing with me, my personality, all semester was, will this count against my participation grade?
I was like, no, first of all, you're not participating.
But even if like, it's not about that right now, it's about you and what you need to take care of yourself.
And I think that safety makes people actually better, more effective workers, better, more effective researchers, for sure, looking at qualitative research, which is what I do.
But when I put my baby girl to bed every night, when I hug her before I put her down in her crib to figure out how to put herself to sleep, I say, you're safe here.
You are safe here. And I'll come back for you, right?
We lose that ability to feel safe.
But if people at the top made it safe by also allowing themselves to be the whole human that they actually already are, it would shift.
Is it going to happen? I don't think so, probably not, not anytime soon.
But am I going to keep doing it?
Yeah, because I think it's, it's worth the flak I get.
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If somebody's listening to this and like, yeah, I'm going through stuff and I've been going through stuff and maybe there's chronic pain in my life and all the questions you're talking about.
These are things I'm thinking about all the time and I don't, I don't feel like I'm ready.
I don't feel like I have the agency or the power to actually make these invisible things visible.
I'm doing everything that I can to try and resolve them to the extent that I can.
But maybe a part of this is just going to be a part of me as I move forward in my life.
And I'm trying to make peace with like that part of it also if that is part of the reality.
I don't want to or I don't have the ability.
You're like, I need this job.
I'm a single parent. I'm working three jobs.
I've got kids and no matter what I'm going through right now, no matter what pain I, whether it's chronic migraines, whether it's whatever it is, if I make this visible and if I make this like a part of the experience of work, I know I'm going to take a hit and right now I literally can't afford to do that and there will be many people who are in that moment.
And if they're not now, it's like it may be coming.
So you're kind of left with the question then, what can I start to think about or do or explore individually to try and make my internal experience as good as it can possibly be given what I'm walking with.
And I know this is a question that you've asked yourself a lot.
And that you've done a lot of research around and exploring and tried a lot of things.
Take me into your experience of this.
It's such a good question because I think sometimes we get lost in sort of like the structural constraints that are on us that we forget that like there's sort of like two levels to how we move through the world are on individual choices and what we can control and then the structural things that are really out of our control.
Work doesn't have to always be the place we make ourselves visible, right?
Like it just doesn't have to be, right?
Even though I make a lot of myself visible at work, the person I am when I go home and I let my shoulders fall and I put my bag down is different.
She is different, right?
And that's okay. So one of the things I think is like find the people where you can tell them like, hey, it's been really hard right now.
And I don't need solutions.
I just need solidarity, right?
Like I just need friendship.
I just need Dr. Becky, the parenting expert says, I can tolerate my own feelings if you just sit with me, right?
Like I just can't tolerate them alone.
I really believe that narrating our pain, even if it's just to ourselves helps us manage it and helps our brain process it because a lot of pain comes from its signals that are sent to our brain.
And one of the things that I found in lots of physical pain therapies, but also trauma therapy and both in studying trauma therapy as well as part of my research expertise is that when our brain sees a pain signal coming, whether that's an emotional pain signal or a physical pain signal, it kind of tries to prepare for it based on past experience, right?
And so we tend to tense up and we tend to like really think that we have to just like shut it down.
But really like that tension is part of the problem.
So one of the things I do when I'm in pain is I actually talk to myself out loud about the pain.
You are dealing with a headache right now.
You're dealing with really severe neck and head pain.
You, it hurts to stand up.
It hurts to take a step. And then I do something I learned from pain meditations and pain therapy.
This pain is not going to last forever.
I don't know how long it's going to last.
I don't know how long it's going to last.
But in telling my brain queuing my brain and body that this pain is not necessarily going to last forever, I don't know that it's not going to last a long time.
But I don't know that it's not going to last a short time.
I have released my brain from those signals that just are queuing more and more tension, more and more tension.
The metaphor that I got in a pain therapy is before an oak tree in the wind when the storm hits our branches are going to be hit by wind and rain and hail and they're going to break.
They're going to break as we brace ourselves against the pain.
But if we're the tall grass in the wind, if we just try to move with it, even when it hurts really bad, it's a little bit easier.
We don't break. We bend.
We adapt. We go here. And I love exercise.
I like, I just want to be an athlete so bad.
I just really want to. And it hurts a lot of the times.
It helps the pain a lot of the times.
But it hurts a lot of the times.
And people will hear me on runs saying to myself, this pain is not going to hurt me.
It hurts me. But this pain is not going to destroy me.
It's just going to be here with me.
You're welcome to stay here with me.
Just learning to talk to yourself in a way where you're like, I know that this is kind of part of my circumstance right now.
And I'm working towards solutions, but there may not be one.
And just allowing yourself to find comfort in the uncertainty and the possibility that maybe the outcome won't be as horrible as we have decided it's going to be.
I feel like being in pain is also like this like tacit acceptance that it's just not going to get better.
But maybe it could or maybe we get better at stomaching it.
I don't actually think my pain is a lot better.
When I move my body, it's just as stiff and crunchy and messed up as it was two years ago.
But I've gotten a lot better at managing it.
I mean, that makes so much sense.
It really jives. But Dr.
Sean Mackie was telling me, you know, it's about what pain really is and isn't and this notion that we tend to think that pain is where we feel it in our bodies.
And like what he described to me is like, well, that's part of it.
You know, like pain has this has this stimulus part.
Something hurts something is injured.
Like there's inflammation somewhere.
But that's just a signal.
And like that becomes pain actually when it enters our nervous system and our brain.
It's the brain that then says this signal is pain.
And you're going to feel this thing called pain.
You know, so you need both parts of that to actually experience this thing called pain.
And this is why I'm saying like oftentimes you like when the original injury or ill-mutter inflammation resolves, if that circuit between like the stimulus and the response in your brain that says this is pain has become reinforced so many times during that window.
Sometimes the original insults can be gone.
But your brain is still like the circuitry is still alive.
So like your brain literally itself is then generating the experience of pain.
And what you're describing is saying, okay, look, let's acknowledge that the brain is a really big part of this.
Like our minds are a big part of that.
And that's not to blame or shame anybody and saying you're causing your own pain.
You know, but what you're saying is like the way that we process it, the way that we tell the story about it, the way that we sort of like as you're using your words narrate it is such a big part of the experience of it.
And sometimes even if it's there with you and you're feeling it, and this is against something that Sean described to me, he's like, you know, and he used the example of somebody a patient who had a neuroma, like a nerve inflammation, which most people often get on the bottom of their foot.
And he was, I think a tennis player is excruciating and finally went to the doctor and said like, goodness, bad news, you know, the bad news you have this thing, like it's in your nerve, you know, like unless we do surgery, you know, it's going to kind of be there and cause a lot of pain.
He's like, but the thing is the pain that you're feeling, like if you want to go and run on this, you want to go and play tennis on it, you're going to feel the pain, but the pain actually isn't going to do any damage.
You're not doing something that's causing more and more harm to you by doing the activity that you love to do.
That's also now causing you this experience of pain.
And that was like transformational because the person was like, oh, I can deal with that.
But it was the story that I was telling myself about like spiraling of what is this doing to me beyond what I'm immediately feeling, what's it going to do and how is this going to destroy me and limit me if I keep doing it.
And that narrative was such a powerful part of the the limiting experience of it in the beginning and then the freeing experience of it, even though it was the exact same situation before and after.
And it's kind of what you're describing, I think.
Yeah. And I know that that's like a privilege and a luxury that's not available to everybody who suffers from pain, right?
But I think it's a huge thing for me.
The initial reaction I had when like a physical therapist was like, well, we can probably not solve all the things in your body that have caused you pain, your surgeons have told you this, your doctors have told you this.
But we could try to train your brain.
My initial reaction was sort of like, okay, you're the worst.
That's like the pain is not in my head.
I'm going to go to somebody who can actually fix this.
Yeah. Okay. Thanks for not solving anything.
You're rude and your pains in your head, right?
But he wasn't saying like your pain is in your head.
He was saying like, let's look at the complicated thing that this body is, right?
And what can we do, right?
We can help your brain figure out how to ignore those nerve signals.
I also suffer from tinnitus.
It's like this chronic ringing in my deaf ear.
I'm like, homey, you're deaf.
Why are you ringing at me?
And it's my brain literally sending these nerve signals to find the thing that used to be there.
And it's not gone, but it's gotten better over the years as I've done work to train my brain, right?
And some of that is literal sensory exercises talking to myself in the mirror.
And I feel so silly doing this stuff.
But I have found that talking to myself was grace and compassion and care and reminding myself that I can withstand this, that I can survive this.
The pain itself, like you said, is not causing damage, is not causing harm.
It might be queuing us to things in our body.
So we should always listen to it and do our due diligence.
But when we know sort of the causes of the pain and we know that we can't necessarily fix them, we have to learn how to walk alongside it, right?
Like this is my companion now.
Okay, let's figure that out.
Let's remind us that that can't hurt me.
And when it wants to amp up, I do this thing where I imagine a circle around me.
And it's just a little circle, a little safety circle.
And the pain is real close to the circle, but it's just outside.
You could be really close to me, but I'm not going to allow you to just break down all of me.
It's the same thing I do when somebody says something to me that really wants to let my rage monster out in response.
I draw my little safety circle and I give myself just 10 seconds.
I just count to 10 quietly to myself.
And that 10 seconds is long enough to cue my brain that, yeah, this input is coming and it's scary and it's hard and it's making you feel all kinds of way.
And those feelings are valid and you get to have them, you get to process them, but you don't need to react.
You don't need to need your react with tension and more pain.
Now that makes so much sense.
I think we've talked about this also.
I've talked about on the podcast over the years.
And my initial response was it was absolutely brutal.
It was taking me down and in a very, very fast and dark way.
And after about three months, the doctors are like, I don't know.
Most people just figure out a way to be okay with that.
I'm like, thank you. That's super helpful.
And again, for anyone who doesn't understand what this is, literally your brain is creating a sound inside of your heads.
It doesn't exist outside of you that you hear.
And for some people to mild, then not a big deal for me.
It's was extremely loud.
And any given moment, if I go and look for it right now, it's still there.
You know, like a dozen years later.
And for the first three to six months, my whole thing was, how do I stop this from happening?
This can't be my reality because this is devastating.
I can't function. I can't think I was writing a book about uncertainty, which actually ended up being something that was super helpful as I was diving into the research for the book.
And I start to apply it to this.
But it was again, one of those things where, okay, so it's, dude, it's just a sound in your head, you know, like whatever, like you hear sounds I was living in New York City.
There's sound all over all day, every day.
We literally lived on the corner on top of one of the biggest subway stations.
Like, and I heard that all day, every day, people fighting on the street, they'll call like everything.
I'm totally fine with that.
I could sleep through the night easy, easy.
But this high pitch, like digital sound in my head was destroying me.
And it was causing paint, like very real suffering.
And it took like a whole bunch of reprocessing that like you were describing to basically eventually get to a point where I said, and as I would start to share it with people, also everyone was like, started offering me cures and ways to fix it and miracle cures.
And all this different stuff in the ventures, like, please, I just stopped telling anyone because I didn't want to be offered any of those anymore.
And I got to a point where, you know, like that sort of like classic Buddhist slogan, abandon hope, start to make sense to me.
I was like, oh, I get it, actually, it's not fatalistic.
It's not about futility.
It's about saying, if this is me for life, what do I do with that?
How do I stop just searching for this to not be my reality?
And saying, if this is my reality, how do I walk with that?
Like, is there a way? And if I invest the same energy and trying to deny it or make it not my reality that if I take that energy invested in, how do I walk with this?
Is there a way to walk with this where I'm closer to okay on a regular basis?
Like, could that help? And that was the shift that was like the switch that got flipped for me.
That made a huge difference because the werehold onto things, a lot of what you just described, where like now I'm, you know, it's still there anytime to look for it, but I'm fine.
You know, and when it first happened, it was absolutely destroying me.
And a lot of the research that brought me to that was actually research on chronic pain because it's the same stuff.
Yeah, it's the nerves in our body telling us something, right?
Telling us something is misfiring or going sideways, but it's kind of magical, right?
Because you said twice, like it's there if I go look for it, but you don't need to go look for it.
You're just allowing it, right?
Just allowing it. And we pathologize things and we narrate things as like good things or bad things and pain is a bad thing.
And I'm not saying like, oh, go be in pain.
It's so great. But like by narrating it as bad, we disallow ourselves from like just letting it be, just letting it be there.
And we come from a culture that just wants to fix everything and fix everything and make it make sense and like, make it certain.
The biggest gift getting sick in my 20s gave me was like an awareness of how uncertain things are, right?
Because it was uncertain before.
I just didn't know it. Now it's uncertain.
And I know it. And okay, how do I live in spite of that?
How do I live knowing that?
How do I make really deliberate choices in my life, recognizing that like, I will do my best, but it's not in my control.
It makes me want to do even better in the sense that like, if it could all fall apart tomorrow, do I want to have put the most love into it or not, right?
And so like the uncertainty to me has been a gift.
And I think it's actually the thing that helps me manage my pain.
Like, the pain is not forever.
Just like nothing is forever.
And like, maybe it'll get worse, but maybe it'll get better.
And that maybe that little bit of like possibility that like, or maybe I'll just get better at letting it be.
And that's the thing that happened.
I got better at letting it be.
And it's like, it just feels like magic.
Yeah. When you think about everything that we've talked about so far in this context, is there anything that's been on your mind that we haven't touched on?
I mean, I think sometimes we think making things visible, right?
Is like, I got to go on like social media and like tell everybody I've been in chronic pain or I need to share it at work.
But I think it's really just about like letting the thing that's been weighing on us.
Breathe. Like letting it out, setting it down.
Sometimes that's even like, journaling about it or just sharing it with a significant other or a close friend.
Just letting it breathe.
Just like setting it down.
Let someone help with the weight of it a little bit.
I think that mentally and emotionally, that is a huge part of navigating like a physical condition in particular.
And so I, I don't want people to walk away thinking like, okay, so I have this horrible thing happens.
I now need to announce it to the world.
You get to choose how to share your story and where and when and what feels good.
But what I want people to think about is how can I just let it breathe a little bit and maybe take some of the pressure off myself to hold it all in and hold it all together.
And that if I release some of it, release some of my attachment to also naming it being in it and being someone who suffers from pain, what might that allow to allow me space to fill in?
Now that resonates so deeply because it's a good place for us to come to the circle.
So I ask you this question many years back now, but time has passed.
People changed. The world has changed in this container of good life project.
If I offer up the phrase to live a good life, what comes up?
I don't remember what I said before, but I think now to live a good life is one where you are present in it, like really present in it.
Even if it's just for five minutes a day, just like allow yourself to just be in the space when you let you're in.
You know, just I'm a new mom.
She's 15 months old. The best moments are the moments where she's looking at me and I'm looking right back at her that she doesn't have to fight for my attention or that's that's when I feel most alive.
That's when I feel most in my world is like just sharing spaces people so fully.
Sharing spaces with myself so fully and being present with the heart and the good and the bad.
That's what it's all about for me right now.
Thank you. Hey, before you leave if you'd love this episode, say if that you'll also love the conversation we had with Sean Mackie about the science of paint.
You'll find a link to Sean's episode in the show notes.
This episode of Good Life Project was produced by executive producers Lindsey Fox and me Jonathan Fields, editing help by Alejandro Ramirez, Christopher Carter, crafted our theme music and special thanks to Shelley Del for her research on this episode.
And of course, if you haven't already done so please go ahead and follow Good Life Project in your favorite listening app.
And if you found this conversation interesting or inspiring or valuable and chances are you did since you're still listening here, would you do me a personal favorite, a seven second favorite and share it?
Maybe on social or by text or by email, even just with one person.
Just copy the link from the app you're using.
And tell those you know, those you love, those you want to help navigate this thing called life a little better so we can all do it better together with more ease and more joy.
Tell them to listen. Then even invite them to talk about what you've both discovered because when podcasts become conversations and conversations become action, that's how we all come alive together.
Until next time, I'm Jonathan Fields, signing off for Good Life Project.
