018 – Stories of Chronic Illness with Kimberly Warner of Unfixed Media Productions

We all love stories of a miracle cure, but for people with chronic, incurable conditions, there is no model for what it looks like to live a meaningful, “unfixed” life.

• Health Story Collaborative
• Enabled Disabled podcast
• Disorder channel
• The Journal of Health Design

• Website: https://unfixedmedia.com/

 

Full Transcript

Spencer Brooks 00:03

Welcome to Health Nonprofit Digital Marketing, where a podcast for nonprofit and marketing and communications leaders using the internet to reach and engage people with health issues. I’m your host Spencer Brooks of Brooks digital, a digital agency for health nonprofits. Today I’m joined by Kimberly Warner. Kimberly is the founder and director at Unfixed, a media production company that focuses on stories of humans living with chronic incurable conditions. So, Kimberly, thank you, first of all, so much for coming on the show today. I really love your story and your work. Could you just get started here by telling listeners a little bit about who you are and what you do?

Kimberly Warner 00:44

Yeah, thank you so much for having me on the show Spencer. I am a filmmaker. I live in Oregon. And about six years ago, I developed a neurological disorder that pretty much bottomed me out, brought me to my knees, and after a couple of years, just really feeling like I had no direction and had lost a lot of my career and focus, I decided to turn my camera back on. And that’s how the Unfixed Media Production started and is now thriving. And we have a lot of different programming going on right now including miniseries and Docuseries and a feature film. So it’s been a winding journey, but a really good one.

Spencer Brooks 01:35

That’s awesome. I was actually checking out some of your work before this recording. And I was just really impressed by the different stories that you’ve been able to tell and the people that you’ve been able to actually kind of connect almost through these films. I wanted to dig in a little bit more into your story, actually, on how you started this. But before I do that, I actually think it would help to even explain to listeners a little bit more about the different types of work that it is that you do, because I understand you do quite a different number of films, like the one that I think I was watching was where you posed a question like what if or, you know, dear, insert that whatever condition here, and then different people would answer those questions. But what about some of the other work that you’ve been doing, could you tell listeners a little bit about that?

Kimberly Warner 02:31

Yeah, so the project that you’re referring to is the unfixed Docuseries that actually started as a feature film. But then the pandemic happened to all of us. And I had already cast 20 people in this film. And I was learning so much from them, like I said, I was I started this really out of my own desire to learn from other people with chronic illness, because I needed to learn how to thrive and prior to acceptance, I was just chasing a cure. So I didn’t want to turn off the camera. I didn’t want to stop working with them, even though the pandemic was forbidding me from getting on an airplane. So, I taught them all to self record themselves, and gave them some film filmmaking 101 tips., and they started submitting these answers to my questions every month. So, we created a docu series and released an episode every month. And we’ve been doing that for 22 months. But that’s caught a lot of attention and actually won a media impact award and got a little spread around enough for other people to pick it up. And that led to a mini-series that a nonprofit actually reached out to me and said, we want to do something similar, but focused on our specific mission, which was the vestibular disorders. And so we cast nine new members and spent seven months together exploring new topics. And then that spun off into a web cast sort of a four-person forum, if you know, the show the View, it’s sort of like that, for people talking very candidly about MS. All around specific topics for each episode. We also spun off into doing a podcast season with one of my partners and are in the process of creating a short documentary again, now that most of us are vaccinated and are eager to begin doing another mini-series next year on mental health disorder. So, you know, the need is there. I didn’t realize it was but it’s becoming very evident to me that there are a lot of stories that need to be told.

Spencer Brooks 04:58

That’s really, really inspiring. And I did want to circle back to what I was going to ask you before, which was actually how you got started, I mean, I understand that, you know, you had a period of time where you had a diagnosis, and you were working through some of your own things. And so I wanted to give you an opportunity to share a little bit more about what that journey was like, and how you you got to this point of producing all of these different kinds of films. So could you give listeners a little bit more backstory on how got to where you are right now?

Kimberly Warner 05:36

Yeah, you know, it was a mess. I’ll tell you that much. I definitely, let’s just say I was a perfectionist and felt like I always had control over the universe. And, you know, straight A’s and bio major, pre-med, all of that. So, I had felt like I kind of had life in my, in my reins. And this was the first thing when I was came down with Mal de débarquement syndrome in 2015, which is a neurological disorder that basically gives you the sensation 24/7, that you’re you are in motion, constant, unending motion, and so as you could imagine, it’s very unnerving as if, when you get off of a boat, and you never get your land, legs back, I have not gotten my land legs back and six years. And it took me, as with many vestibular patients, it took me a long time to sort of chill and relax around this really unnerving sensation. So I ended up like I mentioned in the intro, I really lost a lot of my sense of self, I lost my purpose, I was unable to leave the home for a period of time, I didn’t have a diagnosis for four years, I started to kind of hone in on what it likely was just through Google searches, but I didn’t have a proper diagnosis for four years. So I really hit rock bottom. And the inception of deciding to turn my camera back on and work with people that were struggling with their own disorders was really, like I said, a selfish motivation early on, because I needed to figure out how to do this on my own and not just continue to chase fixes. The fixes were not there, I spent lots of money and lots of time, and sweat and tears, and a lot of hope, trying to find an answer. And I chased all those paths down and nothing worked. So this idea of living unfixed became really central to my sense of self-worth. Because I couldn’t wrap my sense of self-worth up and being fixed anymore. And still, to this day, I’m rocking, bobbing and swaying as we talk. And it’s a definite, it’s more challenging to live this way. But I’m learning to adapt, and I’m learning to have more grace around it. And as many people who have chronic illnesses, we also learn to find purpose through that, and that’s what gets us out of bed in the morning.

Spencer Brooks 08:34

It’s very inspiring, as I said before, I think particularly for me, because unlike maybe a typical documentary that I might see, which might focus on the person who is creating that documentary, being an outside observer on someone else’s situation, I get the sense with you, Kimberly, that you are very much a part of what it is that you are documenting that, as you said, it’s a little bit selfish in a way where you’re using the experiences of other people to help inform your own experience using the skills that you already have. And that’s very unique. I think that’s really admirable.

Kimberly Warner 09:18

Well, I was doing this to add to that, you know, it’s, it’s helping me on a couple of different levels. One is because they’re providing tools and lifelines. But the other is community, the community that has grown out of this, and as you probably have heard many people that deal with rare diseases and chronic illnesses, there’s an element of isolation that comes from that or that feeling of I’m the only one and I have grown such an incredible circle of empathic understanding friends and colleagues through the last 22 months. I know without a fact that I’m not alone and that sense of solidarity has been very, very healing. Maybe not healing our bodies, but it’s healing our spirits.

Spencer Brooks 10:08

I wanted to ask you as well, on the idea of living un fixed, I imagine that is it’s almost a new identity in a way, like you mentioned, like the terms like fixed and unfixed, could you give a little bit more of a sense of what that is like, to actually come to terms with this idea that as a person, you’re living unfixed?

Kimberly Warner 10:35

Yeah, it’s a good question. You know, it’s a, it’s a controversial word. And even for myself early on, I resisted the idea that I might live with this forever. We all want to be in control. And so when we sort of loosen our sense of self and allow our definition to include the gray, and by gray, I mean, the yucky feelings, the uncertainty, the not knowing, the pain, when we broaden a definition of ourselves, that includes all of that discomfort, it can definitely be challenging at first. And I would say all of us go through a period of grieving, where we just grieve the loss of our sense of self, prior sense of self. But then there’s this, I don’t like to use the word acceptance. But there’s this fluidity that sort of occurs where we, in the sense of being unfixed where we allow ourselves to be more fluid with these experiences of not feeling great in our bodies, and being joyful at the same time that these experiences can coexist. So, I think prior to these, my neurological disorder, I think I thought that I could only be joyful if I felt good in my body. And I’ve learned that that’s not true, I can be joyful, I can have purpose, my life can have meaning. On the worst days, when I’m just like at eight-foot seas, when the floor is dropping out underneath my feet, I can still have a sense of self and purpose that that isn’t dragged down by this really unnerving sensation in my body. So, I think it’s really unfixed is a fluid state.

Spencer Brooks 12:39

I’m curious to how the experience of community that you mentioned, through creating these films, and maybe from the perspective too of the participants who are involved in this, how has that helped you come to terms with what you just described, being able to accept yourself and who it is even on your bad days?

Kimberly Warner 13:03

Well, I’ve heard the word grace a lot. In the last 22 months, I think, in some form or another, I’ve heard all of the people that I’ve interviewed talk about self-compassion, kindness and grace in one way or another that living in a body that has its own rules, and its own unruliness, forces us to be kind to ourselves. And so I think it didn’t just occur to me that that needed to happen. But when I heard it from everybody, over and over and over again, it solidified this understanding that there’s, there’s only one way to live with uncertainty. And that is to be kind to ourselves because we never know how we’re going to feel when we wake up in the morning, I may have a grand plan for the day. But if I wake up and the walls are moving, and the floor is dropping out, that grand plan might not happen. And instead of beating ourselves up for it, we recognize that this is part of our life now. And we communicate to our loved ones and our colleagues that that’s the case and we advocate for ourselves and we move forward. So, there’s a real adaptation that I’ve seen in all of the subjects, you know, we have to be creative problem solvers. And I love that about this community. Every single one of us and anybody in the disability community has had to be really creative to adapt to their environments and the world around them. And it’s not a conscious decision to like, I’m going to be creative today, but it’s just survival.

Spencer Brooks 15:01

Yeah, I can see how that the experience of community and being able to share experiences with each others absolutely VeDAl to be able to come to terms with what you just mentioned. And living this new life. And I wanted to actually ask you as well about that that project that you mentioned that you are doing for another nonprofit, because I can also really see how what you’re doing can be valuable to specific communities of people who live with maybe a common chronic condition or set of chronic conditions to be able to share their experiences. So could you tell me a little bit more about that that particular project that you’re working on right now?

Kimberly Warner 15:44

this has just been such a life changing project. I’ve loved every minute of it. VeDA, the Vestibular Disorders Association, they came to me after seeing the unfixed Docu series, and said we’d like to do something similar, using nine subjects or nine of their ambassadors and explore some very specific topics around what it’s like to live with a vestibular disorder, they called it the Life Rebalanced Chronicles. And I partnered up with them to create six episodes and each episode, the first one is all about the body issues and how we navigate our ourselves through the world just physically and how that’s changed. And then we explored how that affects our mind and our spirits and our relationships and our identities. And it was a very rewarding experience to have every month, nine of these subjects from all over the world submit a video talking about their experiences, and we all had different vestibular diagnoses. But boy, did we share similar experiences. I was able to edit these videos together almost so that they were run on sentences where people were completing each other’s thoughts. And it was such a testament to how, even though we might have different diagnoses, we suffer similarly. And so I think for VeDA, this was a really important message to get out to the community and the fact that it was in video really tugged on people’s heartstrings. We’ve gotten so many emails and messages and comments of people saying, I’m crying, I’m sending this to my doctors, I’m sending this to my caregivers. I’m laughing so hard. I had one person say, every week they were coming out on the Disorder Channel. And he said, I anticipate these the way I did the Game of Thrones. He’s like, I can’t wait for the next episode to come out. And so I think there’s that definitely the benefit, you know, VeDA has been running for years. But there’s only so much we can do with newsletters and academic papers and fundraisers. And I think when you get a 10-minute video in front of somebody, and subjects are pouring their heart out to you and sharing their experiences with tears in their eyes. That’s when you can really start to make change and educate people on what is really happening with the lives of people with these specific disorders.

Spencer Brooks 15:45

I love that and I would absolutely agree. I was also curious, Kimberly, what lessons did you take away personally from filming and producing those videos?

Kimberly Warner 18:51

I was so impressed. We did one of Episode Five is called self-rebalanced. And we started with talking about our former selves and you know who we once were, the jobs we had the jobs we had to quit because we couldn’t balance anymore. And all nine of them in some way or another talked about the new identity that they had involved advocacy. And I found that really interesting that when and this probably is true with any population, when you’ve been brought to your knees, and you feel the depths of despair. And then you start to come out of that hole a little bit. All you want to do is help the other people that are in that hole. And it just restored my faith in humanity a little bit to see how much of you know adversity can really shape us into very virtuous, moral human beings that want to help others. So I would say that was a huge take home from this series that we’ve become advocates. And I’m not just talking about the vestibular community, but anybody that’s dealt with chronic illness and develops enough strength to be able to get their voice back out into the community. We want to help others do the same.

Spencer Brooks 20:27

Well, now I just want to go watch these videos. I’m so glad that you are doing this work. I’m also a huge fan of the work of VeDA. And we’ve done work with them in the past. And I just think the organization and Cynthia, they’re great people doing fantastic work. And so I wanted to ask, actually, are those videos are they out right now? Or are they coming out in the future? How can people go and check those out?

Kimberly Warner 20:57

Yeah, the last episode actually just aired two weeks ago. So you can view all six of them. They’re each about 10 minutes, so you could even just watch them in one viewing, get a bag of popcorn and sit on your sofa. You can watch them on the VeDA YouTube channel. You can also watch them on the disorder channel, f you have a Amazon Fire or Roku device, you can just download the disorder channel which is absolutely incredible channel full of powerful inspiring stories about rare diseases and chronic illness. And the whole unfixed Docu series and the entire Life rebalanced Chronicles are available on the Disorder channel. You can also view these on the unfixed community YouTube channel. So there’s three different options. They’re all there. And I actually have been recommending that some people, I have a vestibular Physical Therapist here, who is going to have a workshop where he invites nurses and practitioners and doctors, once you know, the Delta virus calms down a little bit and have a screening. So we can watch three or four of these videos together because they’re very educational. And I know VeDA is also working to get this into a medical school curriculum as well. So they’re not just for you know, sitting on your sofa and eating popcorn, even though that’s fun, too. But they also can be packaged in a way and used for corporate trainings, for strengthening empathy, they can be used in hospital settings, they can be used in waiting rooms in hospitals. So there, there’s a lot of different opportunities to share this information.

Spencer Brooks 22:41

I will make sure to include those links in the show notes for this episode, so that anyone who’s listening can go access those videos if they’d like to watch them. And I would highly encourage them to as well. Kimberly, I did want to ask you, kind of moving into some of the questions I asked pretty much every guest. What is one thing right now that you’re working on that’s just consuming a lot of your brain space and what takeaways could you maybe share with listeners who are encountering that same challenge?

Kimberly Warner 23:12

Yeah, you know, as we all experience when we’re beginning a new project or a new business, I’m sure nonprofits can relate to this. It’s fundraising. How do we continue to keep the lights on and I was extremely grateful that VeDA came along and funded this Life Rebalanced Chronicles project. Prior to that a lot of the Unfixed Docu series was self-funded, and had a private investor. But I feel like Unfixed is growing at such a rapid rate right now that I’m wearing a lot of hats, and I will only continue to be able to do that or won’t be able to continue to do that for forever. I need help, and I need to hire out but I can’t do that if I don’t have the funds. So I’m really, really wanting right now to expand the team and find sponsors and continue with partnerships with other nonprofit organizations to spin out more miniseries and and get more of this information out there. So a lot of my time is spent on, you know, growing this audience and getting the message out there so that we can find those partnerships. Fundraising is really hard. We’re doing a campaign right now for a short documentary called Why We Matter. And this is utilizing the first 20 subjects in the unfixed Docu series and I feel like it’s a really important question. Because I think we know why we matter to each other. And especially within the chronic illness community, how important that solidarity is. But we want to know why we matter to the able-bodied communities. And I know that for one, corporations are really working to to advance their inclusion policies. And in order to do that, they need to develop these empathy training workshops. And I feel like if we can just get more people and more corporations to understand the importance of empathy, and understanding that one in four people in the world have chronic illness. So there’s probably sitting in a room with somebody that has a disability or chronic illness that they might not be talking about. So if we can get more people to understand why these voices matter, we might be able to expand the audience and raise more funding and have more sponsorship so that this work can continue.

Spencer Brooks 26:12

Well, thank you for your honesty, their Kimberly, and I’m sure if anyone listening, you know has interest at all in one of these Docu series or miniseries, you know, now we’ll make sure to get your contact information so they can reach out or a corporation as well, because I can totally see how being able to listen to someone’s story and see their face and hear the words from their mouth can quickly build the empathy and understanding needed where you know, a mere training session or information download, probably doesn’t do the same thing. So I will definitely make sure to get your contact info in the show notes as well, for people to reach out. And I did have one last question, unfortunately, we’re running out of time, this has been a great discussion, I had wanted to ask just what maybe two or three resources you’d recommend to listeners to or wanting to keep up on news and trends in your world?

Kimberly Warner 27:17

Yeah, we’ve developed some incredible partners over the last 22 months. And the Health Story Collaborative is a nonprofit organization that really studies Narrative Medicine and the power of it not just for the patients that are speaking and sharing their stories, but also for the physicians that are listening. It was founded by a Harvard medical doctor, Annie Brewster so Health Story Collaborative is definitely an organization to check out. I love Enabled Disabled Podcast by Gustavo Serafini, It is full of powerful interviews. really inspiring stories of people with disability that are doing good work in the world. I would also check out the Disorder Channel, the Disorder Channel is full of really great tear-jerking content. So, if you want something to move your heart, that’s a good channel to turn to. And then on the level of how patients and physicians are, are changing the conversation, I would turn to the Journal of Health Design. That is a wonderful resource of medical journals that are working hard to change healthcare for the better. So those are my resources. Of course, I would also check out Unfixed media because that’s where you can view all of our work.

Spencer Brooks 28:47

Absolutely. In speaking of, of Unfixed media, how can people get in touch with you if they’d like to work with you or just learn more about what you do.

Kimberly Warner 28:57

Yeah Unfixedmedia.com has everything there. You can access the Unfixed community YouTube channel there and watch all of the Docu series. You can view all of the videos actually on unfixedmedia.com as well, there is a contact right there on the website. And that will go straight to my inbox and I’m very type A with my email. So I promise to reply to anybody that that sends me something.

Spencer Brooks 29:24

Well, that’s great. Thank you so much, Kimberly. That wraps up our show today. For listeners, we are a new podcast. So, it would be a huge help if you’re able to rate and review us wherever you listen to the show, and help other people find great people like Kimberly. And this show is also part of the thought leadership of Brooks Digital. We are a digital agency for health nonprofits and we specialize in web strategy design and development. So if you liked this podcast feel free to check out our website it’s Brooks.digital you can find more of our insights and learn more about our work but with all that said Kimberly thank you so much again for coming on the show today

Kimberly Warner 30:13

This was such a great conversation Spencer, I really appreciate it.