Unicorns, Ear Engineering & Related Anxieties
There’s nothing more delicious than watching the total and well-deserved melt down of Donald Drumpf’s presidential campaign. But, instead of fully reveling in what it means for regaining the House and Senate, daydreaming about what President Hillary Clinton’s First 100 Days looks like, I’m suddenly distracted by the only thing more important than a presidential election: a medical diagnosis so rare that I’ve been christened a unicorn and so dramatic that Queen Shonda Rhimes herself has written a medical mystery storyline about it.
Now, for a politico, Hill staffer, wonk, and well…citizen, very little is more important than the outcome of any presidential election, particularly this one. Except brain surgery.
Let’s back up a few steps. Late this summer, when the DC swampiness forced fellow allergy-sufferers indoors, I couldn’t shake a few symptoms: my first two migraines ever, several dizzy spells a day, and being able to hear my own voice inside and outside my head, like when you have an ear infection.
My primary doctor (a South Asian woman whose insistence on not being called Dr. Mindy Lahiri makes her even more like that beloved character) went through a few rounds of high-powered allergy drugs and a course of steroids. No change.
She referred me to an otolaryngologist who, in under 8 minutes, cut to a diagnosis that impacts fewer than 1 in 1.5 million people in the country and she was exactly right: bilateral superior canal dehiscence syndrome, a congenital bone defect that causes a thinning and/or hole in the bone in the mechanism in the inner ear that manages sound and balance.
In medicine, there’s a tenet that says, “When you hear hoofbeats, think of horses not zebras." How did she know that she was hearing zebra hooves?
I can hear my eyes move.
Take your chin off the floor, friend. I’ve always been able to hear that, but until about 8 weeks ago, I didn’t know I wasn’t supposed to. It’s a unique and specific symptom that belongs to only this syndrome. If you’re curious, it’s much like a finger squeaking across wet china, like a hand squeezing an under-inflated balloon.
How many other people can hear that? Maybe 600 people in the country. Fewer than a third of those have it on both sides (bilateral) like I do. That’s 200 people. I work in politics, so I think about it like this: that’s roughly the same number of Democrats in the House of Representatives. The National Institutes of Health calls anything that affects fewer than 200,000 people a “rare” disease. Unicorn indeed!
The current theory is this: that bone has always been too thin in my ear (hence the life-long eye movement hearing and never being able to read in quiet rooms…) and over the summer, the pressure from my allergies was so intense that I broke one of these bones during a sneeze, which started the other sound problems and the extreme dizziness. (Apparently childbirth is what does it for some female patients. Add that to the Unfair Lady Business List.)
On the right side, this 5mm hole at the top of the canal has so distorted the acoustics and engineering of my ears that I hear my heart beating (whoosh, whoosh), my neck moving (creek), my footsteps, my own voice, and digestive sounds, once or twice. The hole has now become so large that my brain tissue is herniating through the hole, which is apparently why I can hear my brain pulsing if my heart rate is elevated (thump, thump). Along with three tones of tinnitus at all times, it’s a house party up in here. And there’s a small hole on the left side too but, we’ll cross that bridge after we get the right side fixed.
What does that fix look like? A mid-fossa craniotomy on November 28th at John’s Hopkins with the team that discovered this syndrome in the ’90s. They’ll drill into my skull on the right hand side, squish my brain (very technical term) to one side, fill the hole with bone cement, and patch me back up. Their team is the best in the world and every doctor, every audiologist, every radiologist, and every nurse has confirmed the same diagnosis. There’s no second opinion needed and the outlook, so I’m told, is good.
I’ve been trying to keep my chin up about the whole experience, but the time I got really bummed was that I’m supposed to be writing a different piece this week. Not to get too pity party about it, but my 30th birthday was yesterday. I’m supposed to be expounding on what it is to leave childhood, what it means to arrive in adulthood at this moment in our political history.
But then I realized, that’s exactly what this is, maybe just more acute than I was planning on. A face-to-face meeting with a man who will hold my brain in his hands is the perfect time to become an adult. Leaning (figuratively and literally) on my God-given family and the family I’ve collected through the years is a test of my chosen community, a lesson in trust, in asking for help even when it’s not my first instinct, in growing up. And I promise you, if this election takes one more death-defying curve and Donald Drumpf becomes president, Obamacare is repealed, and my health care is threatened, I will be in every campaign ad. I will picket at every public appearance. I will have some things to say. And to burn down.
One more thing: I’m sorry. I’m sorry to everyone I’ve rebuffed for drinks or a festival or a house warming in the last few weeks. I can’t hear you, but everything is too loud. I can’t stand up for more than a minute without a wall to hang onto. I can’t walk faster than a Southern Sunday Stroll. I can’t make a phone call or stand up or turn my head or really do anything without getting dizzy. I can’t go to yoga like I used to every day, and it’s really throwing me off.
But, just give me a few weeks. I’ll be right back.