living with mal de débarquement syndrome

Rather than collectively addressing all rare diseases, this story offers an intimate and honest look at what it’s like to live with a rare, chronic disorder. While everyone’s symptoms may differ, we also have a lot in common. We long to feel normal again. We feel isolated in a world that doesn’t understand what we feel. Part of coping is finding a form of self-expression that can carry us on our worst days and our best ones.

Headlining facts and figures gets our attention. But telling personal stories brings us closer to the heart of the matter. It doesn’t just raise awareness. It motivates. One of the greatest qualities of being human is our ability to empathize. Behind every malady is a thousand personal stories. And this is just one. Putting human faces to clinical names of disease makes it real. And when it’s real, the need for funding and research can then be realized.

I have Mal de Debarquement Syndrome (MdDS).

MdDS is a rare, neurological disorder that manifests as constant perception of rocking, bobbing or swaying. Common dizziness results from the inner ear (your body’s balance system) and your eyes sending mixed messages to your brain. The result is the feeling of spinning or vertigo. Anyone who has ever ridden a merry-go-round or a carnival ride is familiar with the feeling.

MdDS is a different kind of spatial disorientation. The disorder stems from the brain, not the inner ear. The unsteadiness that I live with feels more 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 turns to liquid and my equilibrium is constantly trying to correct for it. Ironically, being in passive motion is the only source of relief. Driving in a car is bliss to many suffering from MdDS…until we reach a stop sign.

Not a lot is known about MdDS. The onset often occurs when a person disembarks from a ship, an airplane or a long road trip. Sometimes it starts after using virtual reality equipment. And sometimes, it starts spontaneously with no identifiable trigger. Regardless, it’s as if the motion of the travel gets locked inside you and it won’t turn off. Ever.

It makes everyday tasks nearly intolerable. Imagine trying to carry a normal conversation on a rollercoaster. Or working on a computer while riding a horse. This is what it feels like. It’s nightmarish in itself, but what makes it more so is to the outside world, you look fine. People don’t understand why going to a meeting can be overwhelming or just sitting is as exhausting as running. There is no outward manifestation. And did I mention, there is no off switch?

I am a filmmaker and a photographer by trade. In this day and age that means a lot of time in front of a computer screen. With the onset of MDdS, I began having difficulty working on a computer or for that matter any screen. Being behind the camera was just as bad. It was as if my trade, my creative outlet, my form of expression was stolen from me by a demon of constant motion.

I have never been a person who is comfortable doing nothing. I enjoy engaging, making, creating. Out of desperation more than anything I began trying new things, testing the waters to see if there was a creative outlet that could help me survive.

I don’t remember the exact moment I discovered needle felting, but it changed my life. It’s a fiber art of the most rudimentary, free-form kind. By repetitively piercing wool fibers with a sharp, barbed needle it compresses the loose fibers into a solid mass…sculpting with wool. Perhaps it was the repetition of the needlework, or the quiet, muffled qualities of the wool, but I found I could lose myself in it. For hours on end. The ground didn’t stop moving, but focusing on the object in my hands helped drown it out. Needle felting became my medicine.

What emerged at the other end of thousands of hours of shaping wool with a needle was 13 hairless cats. This was not the plan. It just happened. Somewhere along the journey I realized I was telling my story, not with words on paper, but with wool and cats, each sculpture a chapter in my wobbly journey. There are aspects I can quantify. Others I can’t. I don’t know why one is turquoise, another one yellow. I don’t know how the scale came about. What I do know is that after living on a sea of constant motion, these felines became a life raft for me. Not just the act of creating them but also what they came to represent. I know that I may never reach shore. But the raft and my companions have helped me not just survive, but thrive during the most merciless of storms.

REX I

Treatment options are currently being investigated but like many rare diseases, there is no cure. When the ground first began to liquify under my feet, I endured by retreating within myself. Cocooned from the world, Rex I was born.

REX II

Hibernation can feel dark and lonely. MdDS is an invisible condition, and like many disorders, from the outside world we may look normal. This schism between our inner and outer experiences can create an even deeper sense of isolation. Rex II was created to help fill that physical and psychic void. The two Rex’s are now inseparable. He hovers over my floating raft. When I’m frightened, he reminds me that I’m not alone.

REX III

Having an incurable condition feels like having an excruciating itch that I can never scratch. Discomfort becomes the new normal. Rex III has no problem reaching his itch. He sits next to me arching and cooing with great relief. And while I can’t alleviate mine, I feel comforted by his assurance that research is underway and relief is possible.

REX IV

One day, about a year into my journey at sea, there was a miraculous stillness. Did my distorted perception exit just as quickly as it had arrived? Rex IV hopped aboard, stretching her eager limbs with hope, yearning for a purpose beyond chasing cures and symptom management. MdDs is a self-limiting condition so the reality of its sudden disappearance was a real possibility.

Rex V

Then my condition took a turn for the worse. Symptoms that often accompany MdDS began to crowd my entire experience. Extreme sensitivity to light, headaches, intolerance to busy patterns, ear pain, anxiety, confusion and depression all hopped aboard. Rex V, with her self-protective, inward gazing darkness was the only safe place to ride it out.

REX VI & VII

One blustery, winter night I lay awake as my raft bounced up and down on colossal swells. Gripping the bed, I tried to stop resisting the motion, telling myself over and over again I wasn’t really in danger. Not an easy task. But with hours of sleeplessness ahead, my options were slim. Eventually, as my nervous system stopped running from the perceived danger, my muscles started to relax, and a new awareness was born. Just as a clear, blue sky is always above the greyest clouds, I accessed a peculiar, pervasive sense of calm that was holding all the movement. And they coexisted simultaneously. During this great storm, Rex VI & VII met and have never let go.

REX VIII

Now, don’t get me wrong. Just because I had sensed a new possibility with my awareness doesn’t mean I became a ball of joy. Symptoms will persist. And if those particular ones don’t, then new ones will eventually take their place. Good days are ahead. And so are bad ones. Ultimately I just want to paddle my raft to shore and that longing will never entirely go away. If we were to ever get a manual on life, it should begin by telling us that we can’t escape the mess of being alive. Hairballs abound. Welcome aboard Rex VIII.

Rex IX

Trying to live gracefully with a chronic illness is hard work. The not-so-distant memory of an effortless physical state tugs at the core of my being daily. Exhausted and grumpy, Rex IX joined my life raft to remind me of the ultimate paradox of being broken. Even in our most wretched state, we are still lovable.

REX X

Nevertheless, I continued to work with my shifting channels of perception as the months passed. Stillness, movement. Movement, stillness. I had no problem perceiving the movement, but my awareness of stillness was like a muscle that needed exertion. Flexing it in my everyday life, especially in loud, chaotic spaces and during bouts of insomnia and stress, I began to notice that this sense of calm could become unconditional. Rex X taught me to stand more solidly for the first time in two years, despite the undulating waters below me. Stretching into whatever arises in the moment, her courageous spine meets life with a yowling yes.

Rex XI & XII

As weeks turned into months turned into years my journey at sea became both perfectly ok and not ok. Grace isn’t born from a fairy tale existence. It grows from our willingness to allow and be curious about our own fragility and suffering so that when we encounter it in another we don’t run. Our hearts empathize. Our cells understand.

REX XIII

Like the eager, green shoots of spring, Rex XIII hops aboard the raft while simultaneously reaching her limbs back into the world. It has now been over three years since my solid ground turned to sea (and almost three million needle pokes into wool.) I continue to experience varying degrees of rocking, swaying and bobbing - and the stillness that accompanies it - on most days. Sometimes one experience drowns out the other, sometimes they cohabitate. I have made peace with my physical condition (as much as possible) and also do what I can to avoid triggers and work with practitioners who help lessen the degree of symptoms. In some ways, we all have a chronic, physical condition - it’s called Being Alive. And while some experiences are more rare than others, we will all encounter contractions and heartache throughout life. Pain tells us we are alive. Learning to be resilient with our pain shows us how to be alive. And letting our hearts be unafraid of pain so we can care for it in others is perhaps why we are alive.

So until there are cures for all diseases, perhaps the most effective and kindest medicine we have is to swim to our life raft, hold on for dear life, and say yes to the ride.