Balancing Acts

At 630 square miles, Louisiana’s Lake Pontchartrain is about the size of Columbia County and can be crossed via a twenty-four-mile causeway that hovers over the water like a balance beam, connecting New Orleans to Mandeville. 

For eight miles of the causeway, you can’t see land in any direction, and it feels like you’re on a highway over the ocean. It is a deeply unnerving feeling to not be able to see the far shore; it’s easy to think there is no destination at all.

In the course of the past year, I’ve taken six trips over this bridge in an attempt to cure my long-standing vertigo problems, which have only grown worse since they first started in 2006. In all those years, I had no diagnosis for the condition that has left me almost completely housebound—until a Portland ophthalmologist told me about an ear, nose, and throat doctor in Covington, Louisiana. I knew no one in the area; the doctor didn’t take insurance; and the trip would require going through not one, but two airports, which, with all their noise and activity and vastness, are ground zero for my condition. But this was the first sign of hope, of possibility, I’d experienced in eighteen years—how could I not follow through?

Once my partner and I committed to going, I realized another problem. We wanted to stay in New Orleans, since we’d never been there, but the doctor’s office was across Lake Pontchartrain. A quick look at a map showed New Orleans as a precarious place, with the swampland encroaching on the city itself, but the long, thin causeway bisecting the vast body of water looked particularly vulnerable. Meanwhile, an online search revealed deaths in Lake Pontchartrain—cars going off the highway, planes going down, boating accidents. It might not seem like much, but in my condition, there was already so much to be feared—unknown spaces and a city that was new to us, plus the threat of possible diagnoses that may indicate a bleak future—that I went ahead and booked a car service to take me over Lake Pontchartrain’s bridge to nowhere, spending even more of our savings. At least I’d have the comfort of knowing a professional was at the helm.

 

That driver turned out to be a man named Alfred, who had just started his own transportation company. He played jazz in the car—the only jazz that I would hear in New Orleans—and we talked about his family, his garden, his plans to expand the business. He was such a relaxed and steady hand at the wheel that it actually allowed me to enjoy the fantastical experience. To be so close to the water, to see nothing but highway for eight miles, to watch clouds billow as if it were heaven in a Renaissance painting, was as disorienting as the vertigo itself. But unlike my vertigo, I could enjoy losing my bearings because I trusted Alfred. Instead of fear, I felt wonder.

On that first trip to New Orleans, in June 2022, I spent eight hours getting tested and returned the next day to learn my fate. I will never forget the doctor’s first words to me as he entered the office: I know what’s wrong with you. How do I describe that moment to people who have never had a chronic, undiagnosed illness? How do I describe the joy that comes when someone, anyone, could validate my experience and tell me what’s been happening—regardless of whether they can even help me? Gratitude and relief bloomed within me before I’d even heard my diagnosis.

I learned I had Superior Canal Dehiscence Syndrome, or SCDS, which means I have holes or abnormally thin closures in both my inner ear canals. This allows fluid to escape and causes my dizziness and lack of balance. As I’ve now had this for a third of my life, I find it increasingly difficult to describe how it makes me feel—it has long since become ‘normal.’ My best description is that I feel unstable, as if I can’t process all the stimuli around me, and I seize up, putting me into fight or flight mode. In small spaces like houses, when there aren’t many people around, I’m essentially fine. But a simple walk in my quiet neighborhood can set me off—neighbors in their front yards, crows calling above me, and cars coming down the street can all be too much at one time. 

A few years ago I finally resorted to walking with a cane to help my balance. I’ve since upgraded (or is it downgraded?) to hiking poles, and during the daytime I use sunglasses to minimize glare and noise-canceling headphones to filter out sound. They help, but even so, I often can’t make it a full block before having to turn around. Sunny days have become nightmares for me: yelling kids, booming car stereos, block parties—there is no respite. It’s a full assault on my senses and nervous system.

I crave rainy, cold winter nights when it’s just me and the stars and I can get around a little more easily. It’s the only time I experience peace outside. It’s the only time I feel safe. 

 

I tell most people that my dehiscence started in 2006, when suddenly it felt like I was walking on a wildly rocking boat in the middle of the sea. At work, I had to cling to walls to get to meetings. I could only eat at restaurants where I was seated against a wall or in a corner, or where it wasn’t too loud or didn’t have a checkered floor. Crossing streets, which entailed processing traffic, pedestrians, and open spaces, became increasingly difficult. I was diagnosed as being severely anemic—my ferritin level was at three—but my condition didn’t get much better as my iron levels improved. 

But I could also tell you about the time I went on my first trip to San Francisco in 1998, when my partner, Brian, and I walked up one of the steep hills that led to Coit Tower and I turned to look down and froze. Brian had to push me up the rest of the hill. Shortly after that a new problem developed: I could no longer take escalators. They felt so open, so airy. I thought I could fall at any minute. 

It was bizarre. I’d moved to Portland the year before after spending eight years in New York City, where I was once a subway messenger and would frequently pick up packages on the top floors of the old World Trade Center. I had traveled many times to visit Brian in Jersey City and taken the large PATH train escalators that lurked underneath the towers. All that time, I’d never experienced a hint of a problem.

I’ve spent an extraordinary amount of time wondering if my SCDS was inevitable. Could I have prevented it? If I’d done something, anything, differently, would I now be living a life of concerts, plays, and dinners out? Yet it’s impossible to tell how and when this happened to me. 

Brian, who I met three years before that San Francisco trip, often tells people I’ve “always” had balance problems. Initially I was annoyed and thought he misremembered, but looking back on it, he may be right. On hikes, I would carefully pick my way over rocks; the hiking trails in Portland, with their lack of handrails or barriers on cliffs, were terrifying to me years before any vertigo symptoms started showing. 

I can think back to incidents in my childhood, like playing dress-up with friends, when I absolutely could not wear high heels like the other girls could. Was that the first hint of life to come?

 

In 2012, six years after my vertigo began, I was diagnosed with stage 2a breast cancer. It came at the same time that my dad was dealing with pancreatic cancer. He died on April 5, 2012; my surgery was on April 13. 

It was possibly the only time I’ve felt genuinely courageous. While my prognosis was good, I had no illusions as to what this could mean for me. Instead of wondering why me?, I thought why not me? I felt positive and energized, ready to meet whatever future awaited me. If it was death, so be it. I wanted to face it head on.

My doctor at the time suggested I read Anticancer, a book by neurologist David Servan-Schreiber, which describes how environmental and lifestyle choices can help boost our odds against cancer. His belief in the power of meditation prompted me to seek out a mindfulness-based stress reduction class. While the near-term effects of the class were better dietary choices and a renewed focus on my personal writing, the long-term effect was stimulating an interest in Buddhism. Its emphasis on equanimity, on the importance of being mindful, without judgment, of one’s experiences helps me, at times, to deal with the uncertainty of my situation.

Unlike my form of breast cancer, where the stakes and the path to take were relatively clear, vertigo exists in a kind of limbo. SCDS isn’t fatal, but it affects every aspect of my life, from when, where, and how often I get haircuts (a large room with hair dryers roaring, many people talking and the radio on is … not great), to whether I can visit my workplace again or attend theaters, art shows, and performances that offer transcendence and new ways of seeing the world. I no longer have access to everyday life. 

 

In March of 2023, I underwent surgery in New Orleans on the right ear, where the dehiscence was more pronounced. The doctor forewarned me that even though this ear clearly had more issues, it might not be the one causing my problems. He also said that recovery can take up to a year as things stabilize. The biggest risk factor was the possibility of deafness.

It’s not easy to say whether the surgery helped, in part because the month before my scheduled surgery, I experienced a sudden worsening in my condition that left me unable to leave my house at all. If I compare where I’m at now to where I was at that time, I’m definitely better. If I compare myself now to where I expected I’d be before my condition changed, I’m definitely worse.

 

My mind is often tempted to scurry ahead and consider what bottoming out would look like. Will there come a time when I suffer my symptoms strongly at home and feel under siege even in my own living room? Am I looking at a future when I no longer can get out of bed? These days, even when I dream, I often have the hiking poles in my hands, or I’m panicking because I don’t have them.

“Whatever takes us to our edge, to our outer limits, leads us to the heart of life’s mystery, and there we find faith,” writes Buddhist teacher Sharon Salzberg. 

I close my eyes and think of the Lake Pontchartrain Causeway, of those eight miles when I stop worrying about the invisible far shore and enjoy Alfred’s company, when I see nothing but the water, the road, and the vast clouds unfurling, emerging, becoming. 

 

In a mindful eating class I once took, the teacher asked us to give thanks for our bodies; it was all I could do not to roll my eyes. You have no idea, I wanted to say. But as she talked us through the meditation, I began to feel a kind of psychic damage I’d incurred by thinking of my body as my enemy, when here it was, still soldiering on—despite cancer, SCDS, and the side effects of medications. 

I also felt gratitude for all the practitioners who have invested a lot of time over the years to keep my body thriving. Most recently, I started seeing Israel, a physical therapist, to help me deal with pain issues but who seemed eager to tackle my balance problems. I was not hopeful; I had done vestibular physical therapy many years ago and have come to think of it as what doctors recommend when they can't think of anything else. But I liked Israel and came to trust him quickly, so I decided to act on faith.

He asked me to walk outside while he followed at a discreet distance. I was slightly nervous about his presence—it was another factor I‘d have to process, which can aggravate my symptoms—but he read my hesitation correctly and assured me we wouldn’t talk.

My suspicion turned to elation when I realized this is the first time that any practitioner has actually experienced my symptoms with me. No doctor has ever just gone on a walk with me to understand how I’m interacting with the world. Israel saw how, when I crossed two driveways that were particularly wide, I immediately veered into a right arc. (I can’t explain why; it’s just something my body does.)

When we got back to his office, he began an exercise to retrain my brain. I closed my eyes and he walked around me in circles. Wherever his voice was, I was directed to picture a weight, a counterbalance, from the opposite side of me. So when he was in front of me, I pictured the counterbalance behind me. 

He took me back out. As I walked across the gulf of the first driveway, I could feel my body wanting to veer right, but I pictured the counterbalance on my left. And I did it: I walked straight through. I was astonished.

“Awareness has no handrails,” said Dzongsar Jamyang Khyentse Rinpoche, which has always felt like a practical joke played exclusively on me. But learning how to counterbalance stimuli gave me a fullness of perspective, an understanding of the way my brain is perceiving the world that was brand-new to me. 

In some ways, this visualization hasn’t radically changed my life. It’s helpful when I see, say, a loud truck heading my way. I know how to react and can often (not always) neutralize its effect on my body. Sometimes I even like to play with it a bit and go toward things that set my vertigo off, just to see if I can manage the situation.

That’s the true significance of this moment. I’m no closer to knowing where I’m heading or even if I’ll ever get better, or worse. But for these brief moments, I can be curious, I can explore, and I can be pleasantly surprised at the workings of my own brain. 

Instead of fear, I can experience wonder. For the first time in seventeen years, I feel blessed relief.

Tags

Health, chronic illness, mindfulness