An Interview with Kimberly Warner

Kimberly Warner of Unfixed contributed her thought-provoking article and video “I was, I am” to our Summer of Fun series. I had the chance to talk to Kimberly a bit more about her amazing work and the stories she tells.

Bob: You are the founder of Unfixed, a multi-media company that explores how adversity can broaden our definition of what it means to live a “good life” (something that resonates particularly strongly with me as someone living with MS). What led you to tell the stories of individuals struggling with chronic pain or illness?

Kimberly: In 2015 I developed a neurological disorder called Mal de Débarquement Syndrome  (MdDS) that manifests as a constant perception of rocking, bobbing or swaying. The unsteadiness that I live with feels like the ground is constantly moving under my feet. Laying down or closing my eyes does not make it stop. Whatever surface I’m on trampolines or turns to liquid and my equilibrium is always trying to correct for it.

As months turned to years, my sense of self dissipated as my relationship to my body, my career and my community faded. Some call this the dark night of the soul or midlife crisis. Because there is terminology for it means I’m not alone. Our stories are different but many of us know what it feels like to try to hold onto the last skinny roots of a former identity as the entire cliff falls away. Just below the veneer of “the perfect life” we all know that living is hard and the list of reasons really isn’t that long. Fear. Loneliness. Helplessness. Pain. It’s a scary place to be when you think the rest of the world is going to keep on going while you’re stuck trying to figure out how to put your pants back on.

I found myself longing to learn from people who, like myself, didn’t have a cure on the horizon but were still seeking to live full, purposeful lives—people saying “yes” to the messy, uncomfortable, painful journey of being alive and learning to incorporate their conditions into a bigger, more vital definition of themselves.

Originally I intended to only focus on two or three subjects but after in-depth phone interviews with dozens of people in the US and UK, I fell in love with the diversity of their experiences and created a way for twenty of us to be engaged in the filming process for over two and a half years. And when the pandemic descended, we adapted to self-recorded prompts, releasing topic-based episodes in a series instead of a feature documentary. Surprisingly, this process brought even more intimacy to the work, subjects were able to open up in the privacy of their own homes without large film crews hovering over their every word. I recorded myself as well, so while many of us were never in a room together, the depth and connection we established together was unlike I’d ever experienced before.

 I know this topic won’t resonate with everyone and some even resist the term “unfixed” as if it’s a glass-half-empty philosophy—that by focusing on the parts of us that don’t fit into the cure-based model of health, we are turning our backs on hope, positivity and a cure. But my motivation for creating Unfixed is to challenge our notions of what a good life is supposed to feel like and create a more inclusive playing field for human expression, one that includes suffering, uncertainty and unpredictability and values these experiences as part of what makes a human heart shine in the most incomprehensible of ways.

Bob: What has most surprised you about telling these stories? What have you found the most inspiring and the most challenging?

Kimberly: I started this project as a search for understanding, to learn to thrive with my own chronic condition. As I came to intimately know the subjects, it became clear that the project was so much more than my own discovery—it became a shared experience. Together, we are learning to find joy, happiness and fulfillment under any circumstance and under any condition. As we mined the resources within ourselves, gleaning insight from adversity, it became clear that people living with chronic conditions may have a heightened version of uncertainty in their lives. But at the end of the day, every human on this planet is unfixed. Adversity is inescapable. We all can learn from the lives of those who are unable to escape pain and difficulty, who live with it every moment of every day, and are using the pressure of their lives to transform themselves into more virtuous, kind, resilient and compassionate human beings.

The Stoic philosopher Marcus Aurelius had some great ideas that still have the potential to radically change how we live today. One of my favorites is: Adversity is inherent to life. Aurelius decided it was important to embrace this fact instead of try to wish it away, and using it as an opportunity to act from wisdom, justice, temperance and courage.

It’s natural to want obstacles and pain to disappear. But do you know anyone who has successfully removed hardship from their lives? Nine years ago when I developed MdDS, I tried everything within my power to make it go away—countless visits to neurologists, naturopaths, osteopaths, ENT’s, physical therapists and psychiatrists. You name it, I tried it. My entire sense of purpose and self-worth was wrapped up in fixing myself. As you might imagine, after two years of failing in my conquest, I was left with a deep sense of hopelessness and worthlessness, not to mention the depression and anxiety that accompanied my already unnerving symptoms.

Aurelius believes that hardship “can only ruin your life if it ruins your character, otherwise it cannot harm you.” My compulsion to root out my own pain undoubtedly ruined my character in those first two years. All my values were displaced by one, nagging obsession—finding a cure. My sense of worth was consumed by living fixed instead of living well. Nine years later, I am surprised (and grateful!) to recognize my short-sightedness during those initial years—that my inability to accept my experience actually caused more suffering. And I’m not alone in this discovery, yet our culture continues to promote that we need to “battle” our way through illness and if we aren’t battling, we’re resigned. Acceptance doesn’t mean resignation. I would wholeheartedly welcome a cure and I still try new therapies to help the symptoms. The difference now however, is that my life’s purpose isn’t wrapped up in getting better. Through accepting my condition, I allow it to teach me, crack me open to the vulnerabilities of being alive and practice kindness toward suffering.

Each month, when I received the subjects’ self-recorded videos, I was renewed and stunned by their submissions. Each in their own way, were growing empathy from suffering, kindness from hopelessness and rejection and a spirit of community and sharing from isolation. No matter how much our collective species resists hardship, it really is the key to fostering lifelong virtues, and I discovered these qualities emerging and shining in every individual in the film.

The biggest challenge in this work is that as a culture we celebrate heroic story arcs, people who have persevered despite the odds and triumphed over hardship, but the reality is often less storybook. There isn’t always a cure for what ails us. Lives are messy. We can’t look to Hollywood or Gwyneth Paltrow’s Goop for solace. There are no easy steps, no serums promising perfect health, no life hacks to cure uncertainty. There is a hinterland beyond the borders of the fixed where pain, limitation, grief and illness aren’t transitory but permanent. This narrative can be uncomfortable, threatening or even scary; therefore, it’s been challenging to find and grow an audience, secure sustainable financial support and penetrate circles outside of the chronic illness and caregiving communities. If anyone reading this has connections to networks, agents or streaming platforms, I’m always eager to connect and see how we can bring this conversation into a wider circle of humans!

Bob: What do you wish the world understood about chronic pain or illness?

Kimberly: My dear, in the midst of hate, I found there was, within me, an invincible love.

In the midst of tears, I found there was, within me, an invincible smile.

In the midst of chaos, I found there was, within me, an invincible calm.

I realized, through it all, that…

In the midst of winter, I found there was, within me, an invincible summer.

And that makes me happy.

For it says that no matter how hard the world pushes against me,

within me, there’s something stronger-

something better, pushing right back.

— Albert Camus

The poem by the French philosopher Albert Camus reveals its wisdom over and over again as I listen and learn from others living with chronic illness. In my own experience living with MdDS and being tethered to a nervous system unmoored, I was forced to lean into a steadiness of spirit where the incomprehensible became imaginable, and the possibility that frightened me most became a doorway into peace.

Within every experience lives the potential of its opposite. Our symptoms may never go away, and likely we will brace against them in resistance, but this only causes more tension and anxiety. So the idea that Camus presents—In the midst of chaos, I found there was, within me, an invincible calm—this encapsulates the core of my work. The twenty subjects from the original documentary project and the many more who have been featured on subsequent series have all demonstrated in their own unique, honest ways, that while they may be in pain, they are also cultivating compassion, unconditional peace and even joy. They are reordering their lives to prioritize what matters—relationships, creativity, advocacy/service, a spiritual life—and they live these values with grace, not dismissing the inevitable darkness, the disappointment, the isolation, even the deep sadness and grief, but allowing the heaviness to be part of the story, and in doing so, something better, pushes right back.

Bob: Besides producing amazing audio-visual projects, you are a prolific writer. Which medium (video, prose, or poetry) are you most passionate about?

Kimberly: Writing is fairly new! I’ve always dabbled in it but never considered sharing with anyone other than family. The Unfixed memoir was initially a place to get everything down before the dumpster in my brain got greedy. About fifty pages in, I didn’t want to stop. I needed to investigate further. I needed to understand my relationship with my body, especially the compulsive continuum of pain and perfection and how those threads wove back into my early development. There were unwatered seeds sitting dormant inside me for decades and writing my story was the beginning of the first rainfall.

So though I’ve worked in film for almost twenty years, I feel a longing to stand in this writing monsoon and see what wants to grow. It doesn’t come easily, I struggle with brain fog, word recall and often thoughts aren’t clear until I see them forming on the page, but I need to follow this impulse, face down my fears of “not being smart enough”, roll around in the sandbox and give it my all.

For those who haven’t read my memoir, it is a narrative of my journey into (un)wholeness, despite physical and psychological derailments including my paternity, health, and very identity; and as I recovered and integrated the father-branch of my story, I learned along the way that he was a prolific writer and poet. So this later life discovery has me leaning into a writers path not only because it is personally healing but also perhaps honors the father I never knew. In my book, I “respond” to his poetry, longing to touch the “nurture” part of our relationship. Playing a game of call and response with his poetry was a playful, intimate (albeit imaginary) exchange where I could reflect on his choice of words, his rhythm, alliterations, the details of a craft he studied and honed throughout his short life. I cannot claim to have any of the training or skill he had with poetry so engaging with him in this way made me feel like his kid — the eager, pig-tailed child, the anxious, bun-headed dancer, the young adult longing to know her purpose. Through his stanzas, his imagery and even his choice of punctuation, I became his student—nurtured by his life’s work and in turn, nourishing me in my own.

Bob: Do you ever feel writer’s block? If so, how do you push past it?

Kimberly: Because a more regular writing practice is a fairly new addition to my life, and is entirely driven by my own instincts without external pressures, I have a pretty relaxed approach. If the inspiration strikes, I write. If it’s hiding under a blanket that day, I take my kitties for a walk instead. The pressure to write can set me up for failure if I have certain expectations around it. Therefore, I write wherever, whenever and however it occurs. Sometimes the best ideas and expressions occur when I’m not staring at my computer screen so I keep my Notes app on the ready and don’t hesitate to sit down on a log, pull off the main drag, or turn on my bedside lamp to scribble a few thoughts down. Because of this, I don’t experience “writer’s block” as much as “writer’s detour.” And I think framing it this way helps expectations not get in the way of creativity. If the words aren’t flowing, instead of seeing a large inhibiting blockade in front of us, what if we allowed our intuition or creative impulse to take us where it needs to go and trust that this “detour” will eventually land us exactly where we need to be? The detour might be twice as long, but also exponentially more scenic, so that extra time exploring ideas through a myriad of ways may serve us when we’re finally ready to take on the blank page.

That said, there’s a limit to this approach, especially when I find myself walking my cats all day long, seven days a week. Then I’ve crossed over from detouring to pure procrastination. :)

Learn more about Kimberly and Unfixed below!