I recently had the chance to connect with Joe Zavala, an award winning journalist who suffers from Meniere’s disease. Normally, Joe covers education and sports for his local newspaper but recently started documenting his journey with Meniere’s Disease on his personal blog. This guest post is one of his latest blog entries, republished with Joe’s permission. I hope you all enjoy it!
The first time I noticed something was wrong with me, I was sitting on my living room couch, reading a book.
It began as a heavy, rolling headache at the base of my skull, only rather than thud-thuding away like my usual headaches — the ones I promptly squash with 600 milligrams of ibuprofen — this one seemed to knead its way toward my forehead, and as it did so I began to feel the weight of my head, which seemed surprisingly heavy.
The sensation I experienced next has been described about a hundred different ways, but the one I’ve found to be most accurate, in my case at least, is this: it was like a two-to-three-pound weight tethered to the top of my head began swirling around me on a horizontal axis, yanking my equilibrium back and forth.
Meanwhile, everything in my field of vision was rotating counterclockwise, as if I had just hopped on the most demented merry-go-round in history and couldn’t get off. Had anybody taken a close look at my eyes just then, they would have noticed them scanning back and forth, back and forth, my brain’s futile attempt to lock on to a point of reference that wouldn’t sit still.
My heart rate became erratic and I began sweating profusely, possibly because my cerebellum was tricked into thinking I was attempting a triple axel off the Golden Gate Bridge. I had never experienced vertigo before but that seemed a reasonable explanation, so I figured the best course of action was to somehow stumble through my house in the general direction of my bedroom, where I could (hopefully) collapse into bed and sleep it off.
One problem. As I moved to stand up my head shifted, and that two-to-three-pound weight tethered to my noggin suddenly became an anvil. As my balance pushed and pulled against my spiraling vision I was hit with a wave of nausea so exquisite in its intensity I actually laughed out loud as I pinballed off the walls like a drunk.
How I made it to the bathroom without decorating every square inch of our house with my lunch I still don’t know (small mercies), but I did, and it was a good thing I moved quickly because by the time I was on my back in my bed it took every ounce of concentration I could muster just to keep the dry heaving to a minimum. I couldn’t close my eyes (try closing your eyes while spinning; it only makes it worse), I couldn’t shift my body to a more comfortable position, and when my sister-in-law called because she was at the front door and wondered if she could come in I couldn’t turn my head three inches to the left in order to find my phone and tap the “answer” button.
I was as helpless as a newborn. Correction, I was more helpless than a newborn because an infant can scream. The only thing that came out of my mouth, besides regurgitated food, was a pathetic, breathy moan.
And there I remained, flat on my back, eyes fixed on a spot on the ceiling which continued its endless counterclockwise orbit. This went on for about four hours, after which I finally dozed off, my clothes soaked in sweat.
About 10 years prior I came down with a Methicillin-resistant staff aureus infection, or MRSA, a nasty, flesh-eating bug that made my entire body feel like an achy bruise and left me, post-lancing, with a dime-sized scar on my left thigh. That was bad, but it was an ear flick compared to what I have since come to know as rotational vertigo, one of several symptoms of Meniere’s disease and, for me at least, by far the most devastating.
It can happen without warning and turn a perfect day into a somersaulting tour through a mall of wall-to-wall, floor-to-ceiling funhouse mirrors. Exit anywhere, pal, watch your step, hope you enjoyed the ride.
I’ve been hit with these Meniere’s “attacks” while sitting on a bench passing the time, laying down for bed, walking the dog, brushing my teeth, turning my head to look out the window, playing catch with my 9-year-old, playing video games with my 20-year-old and typing away on my computer.
Once, while I was sitting in the driver’s seat of my Kia Sedona in the Medford Barnes & Noble parking lot, waiting for my wife to grab coffees for us, I turned my head to follow the sound of a car horn and all at once everything in front of me swirled so fast I stumbled out of the van, braced myself against a tree and waited for the inevitable (I held it in; you’re welcome, Starbucks).
Yes, like an in-law who pops by unannounced Meniere’s keeps you on your toes, and I hate it. It’s only been two years and already I’ve lost track of how many stories I’ve written while battling a monitor that seemed to tilt 45 degrees every few seconds. It’s not the quickest route to lean prose, I’ll tell you that.
That first episode occurred in the fall of 2014 but I wasn’t officially diagnosed until June (you know you’re in trouble when the first thing out of the doctor’s mouth is, “Well, this is really bad.”).
The Ear, Nose and Throat specialist and the internet told me Meniere’s is the result of an abnormal amount of fluid called endolymph building up in the inner ear, where our balance is regulated and usually, but not always, affects only one side. There is no known cause, no cure and in fact one cannot be diagnosed with 100 percent certainty until after they die, by autopsy.
Until then, us Meniere’s folks are diagnosed based on the symptoms, of which there are many: fullness in the ear (like it needs to be popped after a change in elevation), loss of hearing (I’ve lost half on my right side), brain fog, unsteadiness, fatigue and vertigo. The frequency of the vertigo attacks and intensity of the symptoms vary person to person, but in my case I haven’t been floored since Aug. 28, a day marked on my wall calendar by a giant blue “V.”
How bad is it?
According to “Meniere Man and the Astronaut,” a self-help book written by somebody who actually goes by “Meniere Man,” something called the Quality of Well-Being scale compares those who have Meniere’s disease to “very ill adults with a life-threatening illness such as Cancer or AIDS, and that’s when you’re not having acute episodes. When having acute attacks, your quality of well-being is close to a non-institutionalized Alzeimer’s patient, an AIDS victim, or a cancer patient … six days before death.”
Having sat at my mom’s bedside days before her cancer-related death, this prognosis does not fill me with hope. But Meniere Man was just getting warmed up.
“Meniere’s sufferers are the most severely impaired non-hospitalized patients studied so far,” he writes. “This score reflects major impairment in mobility, physical activity, social activity and clear thinking patterns. Meniere’s patients are in the significantly depressed category.”
I’ll tell you what else causes depression. Mr. Man’s book. Of course, it doesn’t help that his list includes different variations of my last 15 New Year’s resolutions. Mobility. I’ll work on that. Physical activity. Definitely this year. Social activity. Trying. Clear thinking patterns. OK, now you’re just being mean.
The good news is, I may — emphasis on “may” here — be able to control my symptoms by avoiding the triggers. The big trigger for me seems to be sodium. Others (I think) include quick head movements, lack of sleep and stress. I try to limit my daily sodium intake to 1,000 milligrams or less, I’m careful about swinging my head from side to side and I sleep seven to eight hours a night. And stress? I suppose I picked the wrong disease/career combination.
A few weeks ago, I covered the Ashland-Churchill football game. When it went to overtime, I considered bolting but just couldn’t (the fan in me, when it comes down to it, still out-votes the reporter). Heading out of town, at 10:20 p.m., my phone started buzzing. The caller ID flashed “Austin, Texas.” It was the woman designing the Tidings sports section that night, and she was wondering if that football story was almost ready since my deadline was, you know, 30 minutes away. I explained that the game went to overtime and that I would drive fast and write faster. This is precisely the sort of situation Meniere’s Man strongly suggests I avoid at all costs.
But here’s the good news: I survived. My tinnitus didn’t start blaring, my balance was right and my brain wasn’t any foggier than usual. I hammered that baby out in 15 minutes. It wasn’t a work of art but it told the story, at least an abbreviated version (the full version, with quotes, was on our website a little later).
The Bright Side
And that’s what I’ve decided to focus on. For whatever reason, unlike most folks with Meniere’s my symptoms seem to leave me alone for weeks at a time. This hasn’t come without some sacrifices. I can’t just splurge on fast food. Ever. Same goes for any number of dishes I used to devour with impunity — spaghetti, ribs, barbecue chicken, bread …basically anything with flavor that’s been featured on “Diners, Drive-Ins and Dives” is off limits.
Also, I exercise, I sleep more than I want to and the days of wrestling my kids are over. It’s easy to feel sorry for myself when I’m reminded of these limitations, which is only about every 15 minutes. Why me, I think (but not say)? Why now (2054 was wide open!)? And how could God, in his infinite wisdom, deliver upon me this bland, low-sodium future only months before Taco Bell’s scientists, after years of feet-dragging, finally roll out the Cheetos Burrito?
There are no answers to these questions so there’s no point in asking them. Instead, I consider the positives. Compared to most Meniere’s patients, including Meniere’s Man himself, my life is pretty good.
I can still go to the movies, even if I have to strain to hear dialogue. I can drive (many Meniere’s sufferers cannot). And when I do suffer an attack, I only lose a few hours, not days like former UFC star Dana White. I can look at my computer screen as long as I need to, another big no-no for most Meniere’s patients. They say journaling helps, so, well, here you go.
In other words, I can live the life I’ve always lived, minus a few luxuries. How long this remission will last I haven’t a clue, but the best Meniere’s specialist in the world couldn’t answer that question either, so I’m just going to have to be OK with that. And I am. Because I don’t have a choice, and also because it’s quite possible that not knowing is a gift.
As I peck away at this Monday morning in my office/closet I can hear my three youngest kids (homeschoolers all) loud and clear. It sounds like somebody, possibly Elijah, has been told he has a math test today and isn’t thrilled about it. I just looked out my window and saw Atticus, my 5-year-old son, lying in the sun on the backyard deck next to Scout, our golden retriever. I’m tempted to warn Atticus about fleas and ticks and rashes, but he’s 5 and such concerns are trivial next to the joys of Scout’s soft, warm fur.
Grandmas have been telling me for years, “Enjoy it, they won’t be young forever and you’ll miss it, promise,” and I give them the whole, “Oh yes, you’re right, I’m trying,” spiel, but the best thing about Meniere’s is it’s jolted me into taking a step or two back, and I’ve discovered there’s so much more to see and hear from that vantage point for those of us who still have eyes and ears. And it’s true what they say: the kids won’t be young forever. And I won’t be able to hear them being young forever. But I can now.
Last week, my wife was driving home with the kids after a church service and asked about their Awana class. Elijah was excited to share his highlight. When the teacher asked for prayer requests, he actually had one — a big deal, since Elijah generally hangs back in group settings. “What did you pray for?” my wife asked. Elijah had been waiting to tell his story and knew he had her attention. “Well,” he said, “I told them that we should pray for dad’s Down syndrome.”
No son, dad’s 21st chromosome is all good, thank you. But really, I’m fine with Elijah not knowing exactly what ails me because that means it’s not important enough yet. Fleas and ticks.
So I’ll keep taking the vitamins and supplements, keep the head-shaking to a minimum, I’ll just say no to the Double-Double with onions (1,520 milligrams of sodium), and I’ll keep writing about this neat little town for this neat little paper that just keeps breathing.
So if I come up to you with my little digital voice recorder and start asking a few questions and you notice me favoring one side or blinking a little too hard, don’t worry. It’s called Meniere’s, and it’s only something I have, not am. Which means it has to live with me, not the other way around.