2022

In the quaint town of Ouray, Colorado, I’m enjoying a candlelit dinner with my husband. Exuberant in the mountains, we talk about tomorrow’s ice climbing adventure and reflect on our stellar week of skiing Telluride. As I take my first bite of salmon, the lights start blinking wildly, the music begins to shriek, and the room is cartwheeling. I know I have thirty seconds to get to safety before I vomit all over our lovely dinner.

The onset of these sneak vertigo attacks started shortly after my 60th birthday, in 2017. I've been living with Meniere's Disease (deaf in right ear, non-stop tinnitus, violent vertigo attacks, ear fullness) for five years now. Meniere’s is a rare, incurable, autoimmune disease of the inner ear, and a living hell to manage. When attacks are active (usually in a cycle of five to seven weeks) it is like being very drunk, very hung over, and having food poisoning­­—all at the same time. The attacks last a couple of hours to sometimes all day. The spontaneous vomiting is the worst: think Linda Blair in The Exorcist. I don’t need a bra, per se, but I do wear one just in case I need a ready receptacle.

When the vertigo hits, I lose motor control and cannot tolerate motion. I need to be physically dragged, like a sled, to the safety of a bathroom. On this particular evening, my only option was to stumble-crawl out of the restaurant and vomit into their pretty side garden. Jeff paid the check and got back to me as fast as he could. After an hour or so, he was able to wrap me in a body lock, and we lurched back to our hotel like a couple of drunks. There was no ice climbing the next day, but I did feel well enough to walk around town. Go figure.

I live full time on the thin edge of the wedge—always at the beginning of something that has the potential to become more dangerous or unpleasant. I live one vertigo twirl away from being deeply humiliated. The emotional fallout of an attack often takes longer to recover from the physical, and the coping skills required for managing this condition are complex. My life is roulette on steroids. I live with a terrorist who flips the switch at will. I am perfectly fine for months, and then WHAMO! life goes on hold for weeks as I ride the waves of vertigo until it is finished with me. It’s very disruptive because it takes time to recover from the trauma, the brain fog, and the hangover feeling. These benders leave me with an eroded emotional bandwidth that I have to build back up. It’s a buzz kill of epic proportions, but it is also provides the most amazing filter—it forces me to prioritize what feels truly authentic in my life.

It feels like a full-time job being me. To maintain some fragment of homeostasis every day, I live clean: no booze, lots of exercise, whole food/low-salt meals, meditation, supplements, journaling to track my symptoms, Meniere's research, doctor appointments, massage therapy, sauna time, and I lie down—a lot. I try to lived stoically, but I have to work hard to divert myself from catastrophic thinking patterns; living in fight-or-flight mode is exhausting. Also, avoiding Covid is paramount, I feel like getting long Covid would finish me off.

On the good days—most days—I lead a beautiful life. I am completely normal, and I look well; I can mountain bike; I travel, garden, read, write, and enjoy life—and I don’t stay home! I take the chance that things will go okay, and if they do not, then I’ll figure it out along the way. I am very good at ‘Plan B’. I am blessed with a solid bench of support, one that I have built for myself over these many years with a lot of heart. I am deeply loved and supported by my husband of forty years, my family, and my friends. I tell my grandson “Teta has the Twirls right now, but I’m okay.” And ultimately, I always am.

You would never guess from looking at me that this is my situation, and that’s exactly the point of sharing my story. I think we all have something chronic that we struggle with. It might not be medical—it might be emotional, familial, financial, or circumstantial. We are all doing the very best we can on any given day and these burdens are real and staggering and can often feel hopeless. We could all use more encouragement and hugs, more benefit of the doubt.

On my ‘Glum Bunny’ days I listen to audible, cuddle with Trixie, and eat hangover food. The very next day I could be at Bolton Valley lift-service downhill biking with people half my age. My life is surreal.

Living on the edge, everything is illuminated for me. Life sparkles, my pendulum swings wide. I have learned to live in this amplification with a deep sense of gratitude. I know what matters and who matters. My capacity for joy and appreciation is on such high alert that I often tear up in the middle of a conversation or meaningful experience. I am pierced by Beauty.

Energy flows where attention goes is the basic rule of neuroplasticity, and so I am trying to train my brain to focus on generating more of the good feelings and less of the bad feelings. When I feel well, my pyranic lifeforce is in full throttle, and so I need to modulate that with meditation and pacing. I want to be awake and alive and feel ready to recoup all the stolen days.  

I am still learning the dance between sharing my situation (because let’s face it, I might really need your help someday, lol) and not being defined by my condition. I think that’s a subtly I will continue to wrestle with; I think it’s something we are all trying to figure out. Just because I walk around with a tintinabulation of bombastic noise jangling inside my disordered ear, I seriously don’t want your pity.

But I do ask two things from you, Reader. First, I want you to deeply metabolize my story to find out how you can think more expansively about a chronic condition or challenge in your life (or someone close to you.) My story is not free fodder, I am sharing this intimacy for a purpose.

Secondly, think about how hearing my predicament—vertical one minute, tits up the next—can infuse your humanity, your understanding of just how vulnerable we all can be. That woman lying on the ground in a heap that evokes disgust in you? That might just be me having a terrible time. We simply don’t know a person’s reality until we take the time to hear it. Going forward, can we see others, seemingly fine on the outside yet troubled within, with a bit more curiosity and compassion? We are all on the spectrum—imperfect humans—and we are all just one phone call (or one vertigo attack) from our knees.

I’d love to hear from you—feel free to send your comments to me. Please share this post with a friend :) and thank you for reading!