Kimberly Warner
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Kimberly Warner is a film director, editor and producer based in Portland, Oregon. After receiving her degree in Pre-Med and Biology at Colorado College and pursuing her Masters degree at National University of Naturopathic Medicine, Kimberly abruptly changed paths and has never looked back. Her work, still founded in a passion for the psychological and social patterns that influence healing, has traded herbs for a camera, prescriptions for storytelling.
Kimberly has written, shot, directed and edited narrative films, webisodes and corporate and non-profit brand videos. She’s written and directed two of her own narrative short films and both have screened at film festivals globally and garnered numerous awards. Her films have streamed and been distributed on Oregon Public Broadcasting and The Disorder Channel on Amazon devices.
In 2015, Kimberly developed cervicogenic vertigo and Mal de Débarquement Syndrome, an incurable neurological disorder that manifests as a feeling of constant rocking, bobbing or swaying. As months turned to years, her sense of self dissipated as her relationship to her body, her career and her community faded. At forty years young, she watched the rest of the world continue on while she was stuck trying to figure out how to put her pants back on.
After years of isolation and desperately chasing a fix, Kimberly realized the chase was making her more sick. So she decided to learn how to say “yes” - yes to the messy, uncomfortable, painful journey of being alive and how to incorporate it into a bigger, fuller definition of herself. She founded Unfixed Media Productions in 2019 as way to find others who are doing the same, have honest conversations and demonstrate that our wounds and weaknesses are our strengths, they complete us and they equip us to help others.
These inevitable peaks and valleys of living with an incurable, chronic condition are part of an expanding Unfixed portfolio that currently includes a docu-series, podcast, round-table webcast and feature documentary film all in production.
Unfixed Media Productions has led to Kimberly’s larger advocacy role within the chronic illness community where, alongside directing and producing media, she writes and speaks about her own patient experiences and how healing can exist even when our bodies can’t be cured. She is the 2020 recipient of the Invisible Disabilities Association’s Media Impact Award.
When Kimberly isn’t nurturing and developing the many facets of Unfixed, she works a small, sustainable homestead with her husband in rural Oregon.
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S01E21 Kimberly Warner .mp3 - powered by Happy Scribe
Welcome to the Enabled Disabled Podcast. I'm your host, Gustavo Serafini. I was born with a rare physical disability called Pfft. My journey has been about selfacceptance persistence and adaptation. On the show, we'll explore how people experience disability, how the stories we tell ourselves can both enable and disable, how vulnerability is a foundation for strength, and why people with disabilities can contribute more than we imagine. I hope that leaders, companies, clinicians, families and friends will better understand our capacity to contribute to the world and help enable us to improve it.
Kimberly Warner is a filmmaker, thought leader, visual artist, and founder of Unfixed Media. Kim's journey from VALERINA to pre Med a photographer, a visual artist isn't defined by her disability. She's learned to see herself as unfixed, an amalgamation of imperfection, empathy, and purpose. Kim's Unfixed documentary was the most compelling film I've seen since Crypt Camp. She invites us into a world where pain and self doubt live together with Grace and courage. I felt a profound connection to her unfixed community, who embrace their vulnerability and share their stories.
Kim's talent for allowing people to be truly heard is unique. I cannot wait to see her latest project, The Life Rebalance Chronicles, which will be out by the time you hear this show. If you're a fan of the podcast.
I have some good news.
We're finally starting a newsletter. The goal is to give you a meaningful updates. Share my thoughts about the issues I'm working through and what I want to explore next. Please go to www dot enable dot com to sign up.
Thank you, Kim. Thank you so much for taking the time to be with us today.
I'm so happy to be here.
So I would like to start obvious somewhere different than you're expecting. Hopefully. So when I was young, I grew up in Los Angeles and I had always not always, but many, many years. I was just in love with Hollywood and dreaming of maybe one day I was going to be a director or producer. How could I get involved? It never really materialized. But I have always carried with me a love for film, a love for good writing, a love for music. And so I want to just ask you questions.
Like, you are such a wonderful content producer, your films, your poetry, your writing. Can you tell me a little bit about, like, what drew you to visual filmmaking?
Oh, my gosh, you know. Wow. You know, I think I was born being a visual feeler, like by the way I interpret the world is through my eyes. I almost rely too heavily on them. And I've known that from a really young age. I was a ballet dancer for about 15 years, and the music really, you know, pulled me in and grabbed my soul. But it was the shapes that the bodies would make and the shapes that they would make together on stage and just the aesthetic that really balancing was just one of my 1st 1st love and balancing.
He never liked his dancers to wear tutus or any big stages or any of the foofy stuff. He liked to just see the black leotards and pink tights and then the lines that the bodies would create. And that really was my first love of form and the visual interpretation of form. So however, I also have a real biology oriented mind and very practical. And so my early studies took me into biology and under my undergrad. I was decided, probably within the first week that I was going to go to medical school and follow my dad and his what steps and do something with the body that way.
And I didn't know how dead I was inside until about well, I dropped out once, and then I re entered medical school, and then I dropped out again. The second time was more of a not my choice. It was a physical issue that landed me in the emergency room. And I woke up in that emergency room that day, and I thought, I'm done. I have to do something different with my life. But I have no clue. And ballet had already been like, I was way behind me at that point.
So it was okay. I'm not going to pursue medical Sciences. Then what is it? And I ended up picking up my boyfriend. He's my husband now, but my boyfriend's camera. And it took, like, a community College class. I didn't even finish that class. I fell in love with photography and the visual storytelling, like how I could look at one image. And there is a photographer, Gregory Cruson. He's current. And he would create these incredibly cinematic scenes where you see, like, a woman standing in her underwear at the sink, and there's just, like, no light in the house.
And there's maybe a door is open and there's a cat. N not just sort of be like, what happened? You know? And I really got pulled in to the power of of imagery, to evoke emotion and to evoke something more. I wasn't interested in fashion imagery and just, you know, pretty pictures. I wanted an image to really tell a story. So that's what led me into film. It wasn't I never intended picking up a camera that I would end up having an earlier career as a photographer.
And then when I got kind of bored, as you can be able to tell, I'm a restless soul. So I got it like, okay, what's more, I'm tired of just be still frames. What more can we do? I need to do just on a whim, write a short script and start a Kickstarter to shoot a short film in Palm Springs. And I found a willing crew of eight people to fly down there with me and dive in for three days and make just this ridiculous art film.
And I was hooked. I was totally hooked. And that was my first experience of collaborative at other than, you know, ballet, of course. But this was so different than me and my camera. This was you had an actor, you had the lighting guy, you had the grip. You had all these different people that were contributing. And it felt like it felt like I was a kid again. So going back to your original question, the origins, I think we're always in me. I was always very visually captivated person, but it went dormant for a long, long time.
And when I was on set on that first short film, something just I thought, how can we do this for the rest of our lives? This is just ecstatic.
Has that emotion continue through your subsequent projects?
Yes. To the point where I I have needed to learn to breathe more deeply. I have needed to learn how to work on anxiety. The anxiety, the excitement end of the spectrum of anxiety, where I can just spin myself into so much passion and excitement that I lose sleep and then I burn myself. You know, I think I tend that fiery energy is thrilled. And now, even with the work after the pandemic or through the pandemic, a lot of the filmmaking has been done not interacting with people and having them submit their own self recorded videos.
I get it fully excited. I've told many of them that when usually they submit through Dropbox. And as soon as I get my little Dropbox notification, it's like if it's 08:00 at night, it's like my husband has to strap me down to not run into the room and watch it right then. Yeah. I don't know. Maybe it's just like I found my drug.
It sounds like it. So I'm curious. Is does it ever two questions, right? Does it ever feel like work in the sense that work is a loaded term, right. Because we associate it with logging through something or something that's not necessarily fun. We just have to get through it to get to the good stuff. But what I mean by work is, does it feel like does it feel like a job? Does it feel like something that you have to get through? Like, for example, maybe you don't enjoy the promotion side of it, but you enjoy the actual filmmaking side of it.
Does it feel that way, or is there just general excitement and passion for you? About the projects that you work on?
I have my moments. It's less about the never. I would say it's never about the content, but definitely the marketing, the fundraising, the let down, the sense of feeling really alone still in this journey. I don't know if you put that in the work category, but I definitely have those periods where I'm thinking, who am I doing this for? You know, all that passion, all that excitement, all those hours. I still have not paid myself a Penny. And it's been 20 months and I never believe any of my contractors should work for free.
So I've been paying them. And, you know, in my mind, I justify it and say, well, I'm getting so much out of this, and I am I truly, truly am. There has to be some sort of sustainability, though, with it. And after 20 months, a little bit more of my business had is starting to come on and think, okay, we got to think about how to make this sustainable for not just my contractors, but for myself. That's that's the Uglier part of the work side and the self doubt that comes with that around.
Does anybody care what these messages are?
I have a similar the podcast I've been working on for six months, but we've really only been live, you know, to the world for three. But it's a similar feeling that I have we talked about a little bit earlier where it's how much impact am I having? When is it going to be sustainable? Do you feel that loneliness, but actually doing the podcast, actually contacting the people and establishing these great connections. It's tremendously rewarding. And it's a I think that you just for me. I just have to believe that if I could keep going, you know, my goal is to push it for as long as I can.
And as you do the work, you know, step by step by step, it's just going to keep building. Even if it's slow, it's going to happen at some point. At some point, there's an inflection point where things per.
I absolutely agree. And gosh, I just read something this morning. It was three tips from Warren Buffett on how to live a successful life. And his second one was Believe in yourself, invest in yourself. That I mean, Warren Buffett, who is, like, the biggest investor in the world, and he's saying, number two thing you have to do to be successful in this life is invest in yourself, which, you know, he talked about engaging in things that matter to you, educating yourself every day, learning from somebody different every day, and just, you know, allow that when you go to bed at night, know that everything you did in that day was an investment in what you believe in.
And okay, if Warren Buffett says that's a recipe for success, then I think we're on the right trajectory.
The exactly. The North Star is there, right? We just have to keep following it. But I wanted to kind of transit. So with your unfixed project, I absolutely love it. It is some of the most engaging, emotionally rewarding content I have seen in a long time. I like I told you before, I put it right up there with I camp with the best documentaries out there. I mean, and let's dive into that. What inspired you to take on that project? How did that come about? Oh, man.
Well, I think I've said this before, but it was selfish. But it started selfishly because I was lost. I needed help, and I needed to find people that were doing what I needed to learn, which was how to live well with the challenges that I was experiencing. I developed this strange neurological disorder six years ago, and it just I bottomed me out. I was incapable of looking at a screen. The sensation that accompanies this is called Maude Department syndrome. It's a vestibular disorder. And I woke up one morning and I was at eight foot choppy seas, and I would take a step, and it felt like I was trampoline under my foot.
And I take another step. And it felt like I was in a fun house. Look at a computer screen or your smartphone, and it just would send my stomach into, you know, these retching circles. And it just was non stop. And of course, as with anybody that has a vestibular disorder, one of the first accompanying symptoms is panic attacks and anxiety, because suddenly your world is upside down, quite literally. And and there's no escape thinking, like, how do I get out of this body for a second?
Because I need reprieve. And with Maude Department, there's no reprieve. It's not an episodic thing. It's a, you know, laying down, standing up. The only reprieve with it is passive motion. So as soon as I get into a moving car, it's not just a little bit gone. It's completely gone. And then as soon as you get to a stop light, it comes back full force. So like I said to many people, like host at stop signs, no.
There'S no reprieve would sleep either.
No, no. I mean, even people in dreams, not that I always dream about being on a boat, but often the dreams take place with that type of motion. It just. And then as soon as I wake up, it's just like my nervous system has to reacquaint itself all over again with this sensation. And after six years, I have definitely adapted, you know, I'm having a really good day right now. So I would say we're on 1ft. See. And my brain can kind of ignore a lot of this.
Yesterday it was miserable day, and I was just standing at the computer and it was just everything was moving, no rhyme or reason. But I I didn't have resources. I was a total fixer upper everything in my life, you know, ballerina straight as felt like I could control the universe. And this was the first thing I felt really out of control with. I even lost my father to a car accident when I was in high school, and I somehow was even able to package that. And my brain is like something I could control at least how I responded to it.
But this was just all encompassing, and I isolated, as many of us do. I couldn't work. I had some compassionate friends early on that were thinking it would pass, as I did in a couple of months. And then when it kept going, and year after year, I lost friendships. I pursue so many physicians, so many physicians. I didn't even have a proper diagnosis until four years into this. So that I've spoken with a lot of other particular patients now, and many of them find it the proper diagnosis early on.
And that's a lifeline, because then at least you have something to tell people what the hell is going on with you. But I thought I was just losing my mind, nearly lost my relationship with my husband. I moved in with my mom for seven months. I mean, I went back to I felt like an instant again. And so frightened. That was when I think back to that time. I was just absolutely frightened and not frightened for my future, not frightened for what was happening, you know, tomorrow.
I was frightened from the experience I was having. It was like my body was torturing me. And so I was just scared. Basically, I didn't even have the energy to think about, like, what is the outcome of this? And what does this mean for my future? I was just scared to feel these feelings over and over and over and over and over again. So long story. I did start to adapt. I also started to lean more into this experience and realize there's no escape. So I better find a way to just allow this to be part of my experience and play all kinds of tricks on my brain.
Like the universe is dancing with me or whatever, all the things that I could try to get my nervous system to calm down with it. And around year four, my husband and I were talking about this idea of how our culture really wants fixes for everything. They want these heroic Hollywood arcs. They want the guy that's going to climb the mountain. They don't want the one that's going to be at the bottom and kind of feeling like shit. And so we talked about this word unfixed and how few mentors or models we had for that.
However, there's a lot of people with chronic illness. In fact, one in three, one in four, I think it is people have some form of chronic illness. One in three in the world is what it is, one in six in the US that includes diabetes and heart disease. So anyway, I thought I just started to put up Flyers, and I thought I'm going to start finding these people and talking to them. And I started locally. I found Dylan, who you met through through the videos. He lives here in Oregon.
And I met Todd, the gentleman with Parkinson's. I met a few others, and I thought, these people are incredible. I want to know more. So it's bred pretty quickly. I interviewed about 50 within a few months, and every time I hung up the phone after discussing their lives. I I felt hope for the first time, not hope for a cure, which is what I hung my hat on before. But I felt hope for all the incredible virtues that come from living a life of disability. So that was the inception of unfixed.
That's amazing. I think what I resonate with that because I started this podcast, in part because disability was always something that was there since birth for me. So I never experienced anything else. And it was it was something that hiding from it. I did in the sense that it was present in my life when I had to go to the doctor, when I had to get fitted for a prosthetic, when I met somebody for the first time. But I got really good at getting past that first stage of awkwardness with people.
And if people accepted me and I became friends with them, then we were friends, and it didn't matter. And the people who couldn't accept it, I wasn't friends with them. They didn't bother me. So there was, like this almost bubble that I had created for myself over time. But then it hit me, you know, in first year of College, second year of College, and there was no escape. It's like you said, I had to deal with it. There was the isolation period, the depression, the who am I?
And what's my place in the world and what can I actually do? And so, I mean, and this podcast is just the next step of reaching out to other people who have similar experiences, different experiences, because I'm learning so much from these connections. I'm learning so much from how people adapt. It how people problem solved. How did you persist in your journey versus what my experience looks like? So can you talk a little bit about your adaptation process? Like, where did you was there a point in time where you really you turned a corner, at least where you said, like, okay, I can manage this on.
This is going to be okay.
I don't think it was a moment, like a singular moment, but I know that I had a family member planned a seed for me around year free that said, what if you have to live with this forever? And that it was really mad at her first, and it took a while for it to sink in. I started, you know, there was this television show. I never watched it, but somebody had sent me a link, and it was called Chasing a Cure. I don't even know if it's still on, but it was somewhere on TV, and they would basically take people that had rare diseases, and then they'd pair them with a bunch of physicians and they'd go on this journey with them and find mature.
I actually pursued it. And I remember getting all the way through to, like, the third interview. And I remember sitting just in the other room there on the phone with this person who was down in Hollywood interviewing potential subjects. And I hung up and I just balled and I felt like I am so tired of chasing. I'm so tired of chasing a cure. I'm so tired of running away from who I am, from who has become. And I was missing this whole universe of community and friendship and connection and insight.
That was this universe over here that has grown because I was only focusing on the chase. So, you know, I emailed and said, I'm done. I don't want to do this anymore. And that definitely it was an interesting change shift for me to finally say no. And that doesn't mean, of course, I'm still always trying random treatments. I just tried amount a new drug trial. Now it's not like I'm like, over is going to be this way, but my focus is so not there anymore. It's like, try it.
And if it works, it doesn't. Whatever. The turning point in my heart was when I felt deep sense of purpose on this new path and that has just grown and grown and grown and grown. So I okay, I'll tell you, even when I just tried this, I think it was six days ago that I started this new medication. And I had this moment, Gustavo, when I took the pill before bed that I actually I had to ask myself, am I ready for this to be gone?
Like, what if this is the magic pill? What if it just takes it away because some people go into a mission? And I thought this six years and this disorder has brought so much into my life, so much abundance and love and creativity. I I am not the person that I was before, and I value all the lessons that this disorder, this demon has descended into me and caused, like, wow. Thank you, demon. This is awesome. So I had to sit there for a moment and think, you know, do I want it to go away?
Which is insane absurd, because it just lay me out sometimes. And I think I'm 46 and I've got probably another half of my life, so I have a Holy cow. But I did have that moment where, like, wow. Or could I be still the same person now? I got if this went away. You know, I just had to go through all this weird stuff in my head when I took this first pill. So far, it hasn't done anything. So.
It'S a great question. It's a weighty question. And that's a great transition into the so what if video that you posted right on Unfixed, which was I mean, I haven't seen anybody talk about that. I think it's such an important question. I would love to dive into that with you. What if tomorrow disability goes away? And then essentially the prompt that you gave them a what if tomorrow the disability goes away? But I forget everything that I learned during this process. Would you take that? And I mean, the answers were they varied in some really interesting ways.
But how would you answer that? And I'm happy to answer it, too. But I'm to hear you.
Yes. I want to hear your reply. I would say no. I would absolutely say no. I wouldn't trade all of the lessons I've learned to make this go away forever. I am willing to suffer with this for the rest of my life. Given what it's given me, what has given me is greater, even though the suffering is great. And like I said prior to you asking the question, it really the growing of my heart. There's a great quote by Andrew Solomon. He wrote a book called Far From the Tree and extensively researched children that were born into families.
And these children had unusual disabilities, unusual circumstances, that some of them had disabilities. Some of them were homicidal. They fell Far from the Tree. But it was a lot of things that can go wrong in the human body. And he and his partner decided to adopt during that period while he was researching this book, and some of his friends were like, Andrew, why would you adopt? You're learning about all the horrible things that can happen to a human life, and you're gonna just go for it.
And he said, this isn't a book about all the things that can go wrong in the human body. This is a book about the love that is possible when things do go wrong. And I will never, ever, ever forget that quote. He has really. It's actually probably see it even better. But if it's in a Ted talk. So if you want to Google that Andrew Solomon Ted Talk, he talks about it in there. But I thought that's it the capacity of the heart grows with these experiences.
And no, I would not trade that for anything. So what about you?
That's a great answer. So the question the way you close it, my answer would be no. For many reasons, I think the main reason is that even within the constraints of my body, I have never felt that I have reached the limits of what I can do. And so what is there to possibly be ungrateful for? Like, what else could I possibly want if I haven't even pushed myself to all of my limits?
Wow. Wow. What a great way of looking at it. Yeah, you're a limitless. And until you feel like you reached that limit and these and within this Avenue of your disability that I almost feel like, as you probably have experienced talking to other podcast guests, but there's an ingenuity and problem solving that. I mean, you hand a kid a whole box of crayons, they're just gonna make a mess, give them a couple Crans. And maybe what you're saying is that disability is takes away some of those crayons.
But, boy, we have to get a lot more creative than absolutely.
But I think there's also it's interesting, right? Because this concept of unfixed is incredible. It's so true. And it's so important to focus on the idea that we're not. It doesn't even matter if we're fixable or not fixable like we are here. This is what we're working with. Just give us the opportunity to express participate the show to be a part of life. Because like I said, our there's so much that we can do that. I think people don't. Society is not structured to really turn that lever yet, and hopefully we'll get there soon.
But there's three kind of buckets, right, that I've seen lately where it's like the bucket. Number one of how to make things better for people with disabilities is better laws, better advocacy. Then there's a second bucket that kind of says it's economic. We need to create more economic opportunities. We need to give people better employment, better a better health care. And then there's a third bucket that feels like a minority that says, you know what? Until we can change the way we perceive disability and think about disability and understand disability, what are we really accomplishing?
Because the second somebody can bend the law or get around the law. If they're not on board with us, they're going to do that. If there's a way to skirt investment or economic opportunity because they're uncomfortable around disability, they will find a way to do that. Like, all three of those buckets are tremendously important, but it feels like where you and I really align is in that third bucket of we have to change the perception first, or at least uncommitted. Ly. But it's the primary route of the change.
Yeah, I agree. And, you know, it's just an invitation. If anybody that is like, oh, I don't want to listen to Gustavo's podcast because it scares me or I don't want to watch the Unfixed videos because it reminds me of what I might be someday. It's what our work is as an invitation. And if somebody takes those ten minutes or those 30 minutes to just be present, I can almost guarantee you they'll walk away feeling better, but they have to get through the door first.
Yes, that awkward in store.
The awkwardness door and the us and them door. I like the word on fixed because I guess what? We're all unfixed, we're all gonna die. This isn't just about disability and chronic illness. I mean, I have a family member who has challenges with their teenage son. We have people losing their homes and wildfires right now. There are things that are really hard to fix, and every one of us is going to encounter something like that in our lives. It's not a huge leap of imagination to go.
I can learn from these people. And the cool thing about people with disability is that it's not time bound. I mean, they are dealing with this every minute of every day. So let's listen to them, you know, let's put them up on a soapbox and go, how do you do it? Because they have a lot of answers. They do.
That's so true. And the thing I think, what the two people who I was most captivated by in the videos, I'm sure it's different for everybody. The first one was Dylan. I mean, what a remarkable human being. What were your biggest takeaways as you got to spend time with them for? You spent way more time with them. So I'm really interested. But his intellect and his he blends, like this enormous intellect with this poetic way of expressing himself that is so authentic and so beautiful. I just want to I can just listen to him all day.
Okay. I'm sending this to him. I just talked about him with a last week. And she asked how, because I actually got to film Dylan in person three times with a whole film crew. When we thought we were this was pre pandemic. And we thought we were doing a documentary. And she said, because Dylan is quadriplegic, he can't use his mouth. He can't eat with his mouth. His only communication devices, his eyes. So even his voice is automated. It's not his voice. And she said, what was that like?
Because when you interview, you want to engage with your subjects. And and I thought that was such a great question. I actually just started crying because I was recalling the experiences we had with him. He had all of us in tears. And we were listening to a robot voice answering questions that he had pre recorded because it would take too much time for the motion eye tracking device. But he transcends the disability, the inability to move his big blue eyes communicate everything. And if you probably experience that even in the videos, you know, he can't.
But there's nothing moving. And actually, there was one video where some of the ability he likes to be able to smile. That was another. He had some movement here, and he's starting to lose some of that movement there. And he was really scared about that loss because it was yet another way to communicate with the human being so that they don't just look at him and feel pity. He is radiant and in struggling. We text a lot almost weekly, and he's not in an awesome living situation.
He struggles with his caregivers. He depends on everything from to get through his day, and it's not optimal. So he's not, you know, Susie Sunshine all the time. But he will also in the same breath that all he ever wanted was to I don't want to use the word enlightened, but to reach his fullest potential as a soul on this planet. And for him, he thought that was through Keto. And then when that fell through, he thought it was through becoming a physician. And then when they all came, he realized, well, this is my vehicle.
Then if I'm still going to stick to the same goal of becoming the most recent human being that I can possibly be, then I have to see as as my teacher for that. And one moment he's cursing it, and the next moment he's going, wow. Okay. I almost want to connect the two of you. We did a podcast with him. It was unusual because he had to pre record everything, but I think the two of you could have a really exciting conversation together. He's just a dear human being.
It comes across. And I'm just how did you like you film some of this to the pandemic? And people are using their phones and and pre recording. But how did you you were able to put it together in such a way or direct them with the angles and the lighting, and because it just felt so polished and it felt so intentional. Like, how did you manage to do that remotely? You have to be one of the few filmmakers on planet Earth that that have pulled this off, right?
There haven't been other people that have done this like this.
Well, I think you're being very generous. I have gotten some dirty laundry in the background of our shots. Well, Allan is my sorry. Go ahead.
It's authentic, though.
Yeah, you're right. You're right. Mia Allan is my co producer, and she actually we've developed this wonderful creative relationship over the years, and I brought her on early on, and she created a cool twelve minute video that we sent out to all the subjects. And it was basically just film making one on one with your smartphone. You don't have it down here, don't have it vertical and face the window light and just kind of the basics. And for the most part, they follow it. I think sometimes it's 20 months now, so they've gotten a little lazy and we get some wind in the shots.
But I actually think people are capable of this more than more than these are really powerful devices. And so we can continue to tell these stories in a really powerful, sort of effective way. And with time, what I've noticed is they've just become that much more comfortable just sharing. And then the other thing is I also send my own responses to them, so they feel like they're not sending it into a black box. Whether or not they watch them. I don't know, but I sent them put them up on YouTube in a private playlist, and they can see me and my response as well.
And I think that has helped them feel less like a subject and more like they're part of a family.
It feels that way. It feels that way. It's such an interesting project. I'm curious to ask you if we were to kind of shift the what if question kind of 20 mm in another direction, right? And say, what if. What if tomorrow, your disability could go away and you would retain your lessons in your memory and your consciousness of who you were, but the disability would no longer be there. How would you approach that question?
Well, that's a little bit like I was thinking when I took this no drug. There would be grieving. Strangely enough, there would be it's Elizabeth, who you probably met through the videos, too. She has multiple sclerosis. She's in her Sixties, really passionate, exceptional human being. And she talks about her Ms as her friend. And, you know, especially with these disabilities and chronic illness, we do experience isolation, and we do experience loneliness. So our our conditions become our friends. In a way, they are our enemies, too. But they also they're always with us.
I mean, who's more loyal than that? They're always there waking up and having it gone. There would be grief if I don't know if I would say no to that, but I would make sure that I would spend every goddamn the rest of my days on this planet to make sure that every other human being feels heard, feels valued, feel uplifted by their own disabilities and their own conditions, because the Grace of being able to be cured and then retain all of those lessons. Like, come on, you got to do something with that, then, right?
There a tremendous responsibility, right?
What about you?
So if you ask me the question today, the answer would be, I don't think I would do it again because I haven't reached my own limits yet. But I can see my answer changing. And ten years, or if I'm lucky enough, 20 years, 30 years, whatever that looks like. I can see that answer changing. And there's some. There's some selfishness there. But I think it's also just a curiosity, right? Like, I've never felt from College on through meditation and some different experiences. I've never really felt, like super attached to my body per se.
I've always been attached to my mind and my consciousness. And so I would like to if I can. Like, we don't have this ability yet as human beings. But if I can experience another body, I would be interested to learn. What are those experiences? Like, what lessons could I learn from? It doesn't. We don't even have to think of it as, like, able bodied. What if I could take, I don't know, the form of a big cat or, you know, another gender, an able bodied person.
Like, there's. There's so much curiosity there in me just to experience different, different forms that I would if I could experience those things, I would I think I would do that. I don't want to stop. Right? I don't want to die until at least my curiosity is satiated. So it's very selfish. But that's how I look at it. Unfortunately, we don't have that that capacity at technologically. So I think the important part is just moving through the stages with as much Grace as we can and keeping those adaptation muscles as strong as we can be.
Keep exercising them and keep working with it and knowing that there's new lessons and new things to learn and experience. Absolutely.
And I think you hit the nail on my head when you said the word curiosity. That when the curiosity dives, then there's not much left. I feel like as long and I've heard Dylan used that word. I've heard Elizabeth used that word. When we can become curious about our experience, drop the judgment, drops the future thinking in the past thinking and the self pity. And just be curious about this extraordinary life experience that is hitting all the marks of extreme suffering to extreme ecstasy. And like to say no to that is to say no just to what our life force wants to on some level, experience, I would say.
And then there's so much there's so much potential in what you're doing. And those people who are have open themselves up so much to be vulnerable, to show that vulnerability, to show it's. Okay. Like, yes, there's pain. Yes, there's suffering. Yes, there's difficulty. But it's okay. I still like my life. We're fine, right? We're still we're getting through this. And I think the more people that can understand that.
Yeah.
Part that curiosity and say, like, how does that work? Like, how is that possible? I don't get it. Well, then, like you said, it's an invitation to dive in.
Yeah.
People live.
Yeah. Because. Wow, there's so much potential there then, because then in a way, we become fearless. You know, I'm not saying we're like superheroes or anything, but I'm not really that scared of physical pain anymore. It's just it's sort of like when that experience just pummels you over and over and over again, you're like, well, okay. I survived. And on some of those days, I was even still laughing and still smiling. And it's almost you become a little schizophrenic. Almost like, well, it can be having this experience, and I can be joyful.
Not always. But sometimes those two can totally coexist, which is a wild thing from the outside. Fix it able bodied world. You think, oh, misery, constant misery because you think. And that's why they want to avoid it, because they don't understand that there is just so much more. There's a relationship between opposites happening all the time.
Buddhism really helps me understand that not just psychologically, but, you know, in my heart, in my gut, because it embraces that idea of stop making those distinctions or don't get so attached to those distinctions. It's both. And right. You don't have to. It's an illusion to think. We have to maximize pleasure and minimize pain. It's both. And they're so intertwined and interrelated, just like life and death, just like, pretty much everything we experience, it's the stumbled, messy, incomplete thing that we make of it what we will.
I'll tell you a funny story. This is embarrassing a little bit, but I was an unusual child and I think it was around 1211 or twelve and my parents did a fire walking experience. They were, you know, kind of a hippies in the 70s. Late hippies. They brought home a book by this gentleman named Holly Burkin, and I kind of was just obsessed with it, and I wasn't able to fire walk. But I remember reading the book and it was kind of talking about how if you can neutralize the projection of what we assume pain to be either good or bad, you can neutralize that and just relax your nervous system and allow it to be.
Some of those people would walk across the cold without having burned feet. I don't know about all those series, but regardless, I thought I'm going to conduct my own experiment. I wanted to see if I could bypass the pain being bad situation. So I walked around the house and outside. We had all these, like, wood stumps, and I decided I was gonna stub my toe over and over and over again. And every time I did, I would just I remember just throwing my foot at it and I in my head.
I was just over and overstaying. Intense sensation. This is just an intense sensation. It's not good or it's not bad. It's just an intense selfish. And I had just bloody feet and I was too young to kind of. I think I thought my experiment had failed because I somehow thought that if I had done it right, then my feet would also be perfect and I wouldn't be bloody and swollen. In hindsight, I think it was an interesting experiment because I was really curious about having a physical experience that could not be reacted to.
And it's what I'm doing all the time with my physical sensation of the dizziness. It's like, am I falling over? No. Is it uncomfortable? Yes. But I can also just allow it to be not terrible either. And when that happens, then my nervous system can at least relax and be chill with. It so weird how our childhood experiences. It might have been a little bit of an oppression moment.
That's a great story. It's true. I mean, for me, I found that with meditation, it's just when, you know, too much walking one day or I push my body too hard because my right hip is used. That's a weak point in my body. I have to use a lot of secondary muscles to, you know, most people use those secondary muscles to balance. I use them for both balance and to move so they wear down quicker so they would spasm, especially when I was a period of time.
I was in great shape. Period of time. I was an awful shape and they would spas them. And I'd have to stop. Stop walking breast, get back up and keep going. But I found that through meditation, I could I could calm that down for quite a bit. I'm in. The more I worked on it, there was a limit. But the sensation of pain didn't didn't stop. Like, I could keep going for longer until at some point, you know, our bodies have limits and it just stops and you have to stop.
But it didn't. It didn't bother me. I didn't get angry about it. I didn't get frustrated. I didn't, you know.
Well, let me ask you, what's the entry point for you? So you say the meditation, how would you? Okay. You're starting to feel the agitation in your body or the muscle pain. What's your very first thing that you would do? It's all in the breathing and the breathing and just creating the breathing, creating space around it. Or it's not even mad. It's just the breathing.
So I didn't learn, like, formally from any teacher. I was studying Buddhism in graduate school at the time, and I got to talk to some a couple of Buddhist monks and pick their brains. And I read books. And so it was just then. Zen meditation focus. So you don't actually breathe through your chest. You're breathing in and out, just through your stomach muscles. And it takes some practice to get used to it. But when you do it enough, even as you're walking, there's almost like this ball of energy that forms in your lower abdomen, in your stomach.
And when you focus on that energy, the sensation of pain diminishes, especially as you slow your breathing down. And and you really compress your lower abdomen in the it's this energy in your gut that you can just focus in on. And the pain just kind of it's there. But it doesn't bother you.
Yeah. There's so many different approaches in Chi Gong, in Chinese medicine, they call the Dantin. Dylan has talked about that. For me, my entry point is curiosity. I found Pema Chodron has been one of my big teachers. She's a Buddhist Monk. And one of her books is called The Wisdom of no Escape. And it's when I'm getting agitated and feeling the movement too much, for whatever reason. If I have an ounce of resistance, even if it's a breathing technique, that's like, okay, I'm just going to open to this so that it will go away.
If I have ounce of thought towards that, it doesn't work for whatever reason. How I'm wired. So I have to just completely dive in and let the experience pummel me, and we'll just let it be and become curious about it. So my entry point, you said, is breath, and mine is curiosity of just going, okay, welcome. Here you are. And then the breathing can open up, and then the space around it can open up. But for whatever reason, if I resist, it just a little bit, it's like my brain knows.
Like, I got you. You're doing this. So that it goes away. Right. And then it doesn't work.
That's an amazing entry point, though. That's a really I'm gonna I'm going to practice that and read that, because that's that's a very interesting technique, and it makes a lot of sense, right. It's the it's the struggle that when we struggle against something, we end up struggling more. You don't conquer it. You know, you accept it and let it in, and then you can actually work with it.
Yeah, absolutely. The wisdom of no escape if you haven't read it, it's a small little book, and I just adore. I don't adore it.
Thank you for that. That's amazing. Is there anything that I missed, Kim, before we wrap up that you'd love to talk about?
Oh, gosh. I mean, I could talk for hours with you. I just want to know, do you have any free pets in your life? Who are your companions? Daily companions.
I mean, I'm close with my family. Mom, brother brother has three children and young children, two daughters and a little boy. And they're just amazing. And I have some close friends. I have no pets. I am a dog lover. So I love love, love, love, love dogs. But there's just not the time in my life right now for a dog. And I've never been I think when I was young, I was allergic to cats, so I was never really on to them. And just that I think just that unconditional love of a dog and just happiness and spending time with them and just that bond of loyalty that you can form has always been something that I've loved.
And I've always understood dogs. Like when there was a dog barking at me when I was young, I was fearless. My parents would get scared. Like, what are you doing? He's like, no, no, I've read I read some books about it. I know what to do. And just, you know, you go up to the dog without any obviously, there are certain dogs that, you know, you you stay away from, but you approach the dog without fear and gently and kindly and just feel its energy. You become friends pretty quickly.
Yeah.
Yeah. So true. I like hearing people's support teams. I think care teams are really the invisible forces in our lives. And some of us don't have big ones. And sometimes it's not even a human. Sometimes it's an animal. Sometimes it's a book, a spiritual leader. It's just interesting to me because I think, obviously, you are taking your experiences of this life to another level and you're sharing those experiences with the world. And I have to imagine your mom and your sizzling and your nieces and nephews. All of those people are a big part of who you are today.
Absolutely close friend that I stay in touch with, that we hang out with in the sense of like within my constraints and disability. I've lived independently for a long time. So, you know, I drive. I have a business, your audio video with my brother. I'm pretty independent, but the support structure, for sure is important. I do need, you know, certain things here and there which are helpful. But I since I think I learned that in College. I grew up in Los Angeles. I went to school in Chicago and had to adapt to a dorm room in a building that was built in the 1920s that was not very friendly.
And so guess what? You have to ask friends for help and you find your way.
I heard a best quote the other day. This was pertaining to chronic illness, but it can relate to disability in general. With disability. Sometimes your friends become strangers and strangers become friends.
Yeah.
I think all of us can relate to that. Our circles keep growing.
They do. They do, because we're putting the work in to grow them. Right. And we're being open enough to connect with people, which is which is so important. And I if there's something I wish I could communicate with people who are non disabled, it there's so much fear of judgment, of expectations, of just fear of what other people are going to think of me, what other people are going to say, what my status is in society. And I just wish I could, you know, open their minds for 2 seconds.
They like of that doesn't matter. Go be you.
You are saying that you are you don't have to wish you are saying that. And slowly, slowly, I think people will open their eyes. I've had family members even had their eyes opened in the work that I've been doing. And it's not easy, but it if the willingness is bare, their hearts are open.
Absolutely. Can you give us a preview of what's next for you and where people can find you and connect with you?
Yeah. I'm very excited. We have a new mini series coming out. I've been partnering with Vestibular organization called Veda, and we are on our currently making our fifth episode, five of six. And those are going to be released mid August 1 a week, and they'll be on the Disorder Channel, which you can access. I don't know if you're familiar with the Disorder channel, but you can access it through Amazon, Fire or Roku. And they have incredible feature films, documentary films. They show all the unfixed films on there, all pertaining to product conditions, disability and rare diseases.
So they're fantastic. And all of those episodes will be there. And they'll also be eventually on YouTube. And I'm working on a project with Elizabeth, who is one of the unfixed subjects. She had a vision to create a dialogue between four people who have Ms. And every month, every second Wednesday of the month, these four super dynamic, hilarious, very engaging humans get together and they talk. I think two weeks ago, they were talking about sex. They were talking about drugs. I mean, they go for it, and it's kind of no holds barred.
That's been really fun. My vision for next year, I'm hoping to get some helpful fundraisers to join on board, but I really want to do another mini series focusing on mental health disorders. I think our our country, our whole world. But, you know, we've heard a lot of stories of the mental health crisis since the pandemic. And so I really want to focus on some of these stories. These anxiety, depression opening kind of. These are unfixed journeys that a lot of us go through and want to dig in a little deeper with that.
It's just my five year plan keeps growing, so I'll stop there.
That sounds super exciting. I'm going to have to pick up a Roku. It's really why does Apple not have this channel yet, right?
Yeah, I know. Believe me, every day I'm just pulling my hair out. I want to go back to the original idea of going house to house now that I'm vaccinated and a lot of the subjects are vaccinated, going to these people's homes and doing episodes where we talk with them for 30 minutes. I've sent letters to Oprah and sent letters to Barack and Michelle Obama. I've sent letters to Hillary, and I've sent some like, hey, guys, we get this on to Apples. Do you need nothing yet?
But I'm not not convinced that somebody isn't going to say, hey, there's something here. And then it could be, you know, this could go on forever. Gustavo, we could meet and do an episode hanging out in your place and all the incredible lives that deserve at least 30 minutes, right? At least a 30 minutes episode.
Have you ever thought about filming yourself in an episode?
I you know, like I said, I do the private ones to the subjects. And FA has been encouraging me recently to get out more and doing. I grew up in Wisconsin. So I'm a little bit of that farm girl don't focus on yourself kind of mentality. And there's so much of that now with social media that I want to get distracted by if it feels like it's important. Yes, I will. So far, my farm girl attitude has been keeping me hiding behind the camera.
Well, maybe one day you won't. And, I mean, you've got a new fan, anything that you would like me to collaborate on, I would absolutely love and be completely GungHo. Don't even have to think twice about. So just. I just I love doing this. I love connecting with people. And you are just a remarkable human being. I'm so happy we met. I'm so happy that I got a chance to experience your work. And I'm just really looking forward to helping and seeing what else, what other beautiful projects you can bring to the world.
Me too. So I am so in love with you and your work and your passion and let's say that this isn't goodbye. This is to be continued because I have a feeling we have some work to do together. I can't wait to get some cameras on you.
Thank you so much, Kim. It was a pleasure and yes, to be continued.
Alright, take care. Have a good night.
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