When broken is the fix

Author's notes and practical guide

Are you new to Unfixed? Unsure what it means? I recommend starting from the beginning for my deeply intimate, unconventional tale of healing. And if you missed last week’s epilogue, you can find that HERE.

Today I end my memoir with an exploration of how unfixed might manifest within stories of illness, but by no means is this examination limited to the physical body. As I’ve explored the topic over four-and-a-half years it’s become clear—we are all unfixed. Whether it’s a broken body, broken mind, or broken spirit, we all, someday, will meet life’s tempest. But instead of waiting for the rainbow, I’m learning to listen to the rain, and it has a lot to say when we lean in and listen. The rain may not agree with our plans, our self-asserting vision, or even our dreams, but the world is already full of stories about after the clouds part. And we need these stories of triumph! But when we prioritize and value answers, resolution and a shiny bow over the more nuanced, quieter but no less powerful wisdom born and nurtured within the storm, we forget the essential, natural alchemy of the dark. We forget that failure necessitates reinvention, grief buoyies and fastens us to humanity, and sometimes the very experience of brokenness is our fix.

Things falling apart is a kind of testing and also a kind of healing. We think the point is to pass the test or to overcome the problem, but the truth is that things don’t really get solved. They come together and they fall apart. Then they come together again and fall apart again. It’s just like that. The healing comes from letting there be room for all of this to happen: room for grief, for relief, for misery, for joy.

-Pema Chödrön

Health is inherent to all life. When injury, disease, or sickness occurs, our bodies naturally do what they can to heal and ward off illness. Modern medicine has accelerated the fixing mentality by providing a pill for everything we can imagine that ails us. We’ve arrived at a place where we expect health, and we’ll go to nearly any means to achieve it. As a planet we spend $4.2 trillion annually on health and wellness. This isn’t a bad thing. Survival is hardwired into us. But what happens when something breaks that we can’t fix? What do we do when treatments, pills and elixirs are exhausted and our health hasn’t been restored?

We are conditioned to believe that perfect health, status, and successful careers are the key to happiness but many lives challenge this paradigm as they awaken each day to illness, limitation, and loss with no solution on the horizon. As a culture we celebrate heroes 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.

Yet within these dark borders, the human spirit often not only prevails, but thrives. It defies logic. When faced with the predicament of no apparent answer, no fix, many eventually find adaptation, connection, resilience and purpose outside of society’s prescription for happiness. In some, it can even manifest as a paradoxical experience where brokenness IS the fix.

The unfixed person has learned to see the world differently. Uncertainty has become a certainty. They’ve learned that pain and joy can exist simultaneously. They haven’t turned their back to the possibility of answers or a cure, but they’ve learned to positively engage with life despite the lack of a fix. More often than not, they’ve reordered their lives prioritizing relationships, creativity and learning over status, achievement and position. Our biology does everything in its power to fix us. But when biology fails, the unfixed person embraces adaptation in its place.

In a time when we are being bombarded by the media telling us exactly what a good life looks like we need to reimagine wellness and celebrate honest stories of lives unraveling into beautiful chaos. We need stories of what the human spirit is capable of despite (and even sometimes because of) our challenges. And the unfixed are everywhere. They’re not bound by race, religion, or age. They can be found in every culture. These aren’t Hollywood scripted character arc stories. They’re often messy. Sometimes they’re visibly evident, sometimes invisible. Unfixed stories don’t follow a set timeline. Some are born into adversity. Some are just entering into it, some emerging from it.

Wellness doesn’t mean constantly striving toward a better, more perfect version of ourselves. That is more often than not, a recipe for self-loathing and a dwindling bank account. Instead, wellness is wholistic and inclusive; it invites the entire spectrum of life—the good, the bad, the ugly—into relationship with ourselves, our communities, our planet. My life-long obsession with fixing negated this communion and exacerbated suffering. The kid who couldn’t control her thoughts needed to know her noisy, compulsive brain was lovable and human. The teenager locked in the bathroom, picking skin for hours wanted to embrace her imperfections. The young woman who froze instead of felt, who preferred magical thinking over reality, who buried rage under a pleasing smile, longed to welcome her feelings as wise and powerful allies. The adult who became overwhelmed by shock and grief needed to know she could survive the heat of living.

Standing on the precipice of a new way of being, I question:

• Can wellness include illness, disability, discomfort and limitation?

• Do we need to always be improving, actualizing, reaching, and seeking, to be fully living?

• Can grief, fallibility, failure, impermanence and brokenness be the very healing we seek?

I want to share a practical example of what living unfixed looks like in my daily life.

Moving through a continuum of fear and resistance into courage, curiosity, and ultimately stillness has become a primary tool to manage symptoms, and I now find it applicable to not just dizziness but any contraction or limitation I encounter. For me, wishing or visualizing symptoms or experiences away only creates more tension and anxiety. It’s as if my brain is listening, hears my desire to change “what is” and interprets this mental activity as danger. Kim wants something to go away, she must not be safe! This may not be the case for others; I know some are able to wave their magic wands, visualize, and positive-affirmation their way into relief. And more power to them! But when a hyper-vigilant brain is on board, any ounce of wishing away my experience signals trouble. So instead, I welcome the angels, the demons, the lilacs and the hot dumpsters full of shrimp. Then, and only then, can my nervous system relax and allow for the mysterious alchemy of composting and compassion to emerge.

I awaken in the middle of the night, immediately aware of a body unmoored as the bed beneath me bobs up and down. I tense around the movement.

I imagine stillness surrounding the motion—blue sky above the clouds—but it’s too strong. In my still sleepy state, I want it to go away. The primal part of my brain is doing her job, alerting me to perceived danger.

Thank you brain for protecting me.

I let myself resist for a while, feel the feelings. Get grumpy or scared about it. I honor the growl and grip and give it space to be real and heard.

But just like a Chinese finger-trap, the more I physically and psychologically resist, the more trapped I feel. So as the sensations persist, I eventually ask myself if I’m feeling courageous.

Am I willing to turn toward that which I resist?

If the answer is no, I allow frustration and contraction to be my teacher for this moment, this hour, this day.

If the answer is yes, I slowly inch toward the sensations with open curiosity:

What are the waves like today? Am I on a river or an ocean? What parts of my body are tensing around the sensation? What parts are chill and going along for the ride?

I notice and allow the waves to crash under and around me. I thank the parts that are contracting; I thank the parts that are fine with it. Sometimes the waves even increase in intensity for a spell as I pour my full awareness into them. But I stay curious, open.

The sensation doesn’t change, but my relationship to it changes.

The waves aren’t bad or good, they simple exist.

But they are not all that exists. As resistance to the motion dissipates, a spaciousness fills the frame—an abiding, silent, fecund emptiness that surrounds my experience with stillness—not a stillness that erases the sensations, but one that holds them in an effortless, unconditional embrace.

Rinse and repeat.

Five long years after the first symptoms of dizziness began, the pandemic descended over the planet and tele-med became a standard for care. This enabled me to finally work with Dr. Shin Beh, one of the country’s leading neurologists for central dizziness disorders, and receive a long-awaited diagnosis for the tempest that had descended into my brain. Within a thirty-minute consultation, he explained my symptoms as Mal de Débarquement (MdDS) or Non-Motion Triggered Oscillatory Vertigo—a rare, neurological disorder that is uniquely identified by the relief of 24/7 rocking, bobbing or swaying when in passive motion. MdDS is not a psychiatric disorder, but because the vestibular and stress-response systems in the brain are connected, patients that experience shock or trauma can be more susceptible to developing centrally-related vestibular disorders.

A recent study published in Frontiers of Neurology discusses the challenges to diagnosis and care and promising treatment protocol:

To this day, MdDS is categorized as a rare disorder, although this classification may not accurately reflect the prevalence of the condition. This discrepancy arises from the significant number of individuals who remain undiagnosed due to the challenges of accurately identifying the syndrome (3). The prevalence of this condition has only been assessed in one study to date, where it was estimated to have an occurrence rate of 1.3 to 3% (similar to Menières disease) in a neuro-otological clinic (1). On average, MdDS patients undergo 19 consultations with healthcare professionals before receiving a correct diagnosis, where this diagnostic process can last several years.

In addition, some researchers and clinicians identify a correlation between chronic dizziness and serotonin dysfunction common in certain mental health disorders including Obsessive Compulsive Disorder (OCD). While I clearly demonstrated OCD behaviors from an early age, I never considered this particular brain chemistry might predispose me to MdDS. One of the most successful treatments for OCD is called Exposure Ritual Prevention (ERP) therapy that gradually exposes individuals to situations designed to provoke their obsessions and teach their brains to respond to stressors more effectively. As someone with a lifelong obsession to avoid (or fix) physical discomfort and pain, it is notable and fascinating that my brain created the exact ERP therapy I needed—constant, inescapable discomfort—in order to finally surrender to the unnerving experiences of being in a body. And because of the link between the stress-response and vestibular centers in the brain, I only intensified symptoms by focusing on them. This is exactly why allowing the symptoms, ie. ending my chase for a cure, became my very doorway into finding peace.

As I type this sentence, the floor sways under my feet, I am buoyantly unsteady in space… and I am relaxed. After years of fighting, my brain finally realized she wasn’t in danger, that pain and discomfort can coexist within a deep sense of calm. I am a living demonstration of this truth.

If you or someone you know is struggling to understand the terrorizing experience of having stillness ripped away, you are not alone. There are compassionate advocates and specialists who understand these conditions and know how to help. I’ve compiled a list of resources—youtube channels, healthcare practitioners, podcasts, books, articles and patient advocates who are ready to embrace you with the steadiness of spirit that, you too, will someday experience again.

Organizations:

Vestibular Disorders Association

ADeV

Video/Audio:

Life Rebalanced Chronicles

The Steady Coach

ICU Podcast: Real Patients, Real Practitioners, Real Conversations

Talk Dizzy To Me

Meniere’s Muse

Finding Joy in your Vestibular Migraine

Articles:

NYT article: Why Doctors Dismiss Dizziness

New Yorker article: Why Dizziness is Still a Mystery

Practitioners/Clinics:

Dr. Shin Beh

Johns Hopkins Neuro-Visual and Vestibular Disorders Center

Books:

The Dizzy Cook

Finding Balance

Victory Over Vestibular Migraine

The Mediterranean Migraine Diet

Disembark: Overcoming Mal de Debarquement Syndrome