I'm going to veer from my usual Cole neighborhood chatter into some territory that explains why I've been silent these past weeks. Sure, I took a vacation, which is one reason. But mainly my reason for not writing is health-related, and I'm writing about it here for two reasons 1) by way of an explanation (as if I have some huge readership that demands such a thing and missed me so much they are talking amongst themselves about boycotting my blog altogether) and 2) in case there is anyone else out there who has dealt/deals with a similar malady. I am finding that relative experience is one of the keys to sanity when it comes to this condition; doctors don't have a very good handle on it, so it's those of us in the trenches that need to tell our stories and let others know that they are not alone.
Two years ago at the beginning of June, I was fighting a wicked upper respiratory infection that I'd picked up while seeing family in Ohio, and taking a course of avalox, an antibiotic I'd never had before. I'd been experiencing a feeling that I can only describe as feeling like I was on a cruise chip-more like a catamaran-on rough seas. I would tell my co-worker "I feel like I'm listing" as I walked from the door of our office suite to our offices in the back. I felt lightheaded, unable to fully concentrate on the task at hand, agitated. I called my doctor; he, however, was on vacation, so I got the doc who was filling in for my regular internist. After explaining my symptoms, Doc Al told me to wait it out, finish the meds, and call him if anything changed.
Two days later, I woke at my normal time, around 7, and when I lifted my head from the pillow, the room was upside down. I was spinning, hard-the best analog would be bed spins, the worst you've ever had, often brought on by night of overindulging. I grabbed S.'s arm and let out a "whoaaaaa..." I was instantly nauseous, disoriented. We called the doc and he told us to come in. Two hours later, barely able to walk, we're in the doctor's office and he's performing "tests"-he would lay me down on one side and ask me how I felt. In a word, like my brain had turned into a tilt-a-whirl. "Wow," he said as I lay on my left side, the room turning and turning in the widening gyre of my vision, "come look at this." He motioned to my partner, who came over to see what was so "exciting" - my eyes were jumping in their sockets, a reaction to my vision attempting to focus. It's a condition known as nystagmus, and it sucks; apparently, my doc had read about it but never actually seen it present in a patient. He was visibly excited. I was less than thrilled. Sitting me upright, Doc Al said "okay, now the other side." Before I even had my cheek resting on the examining room table, I said "oh, it's so much worse!" My eyes felt like they were about to jump out of their sockets. The doctor sat me up, and I proceeded to vomit. Doc Al, in that moment, disappeared.
By the time they finally had a solid diagnosis, it was days later. I'd been told initially that I had a condition known as Benign Paroxysmal Positional Vertigo, or BPPV. Essentially, they explained, one or more of my otoconia-small calcium crystals that float freely in the saccule and the utricle of the ear that help with balance-had become lodged in the cilia, or found itself somewhere outside of its normal "territory" altogether, and until those otoconia found their way back into orbit, I was going to experience these bouts of vertigo. One problem: BPPV normally presents unilaterally, whereas I was experiencing bilateral symptoms. ENT's finally diagnosed me with a condition known as vestibular neuronitis, or the inflammation of the eighth cranial nerve (the "balance" nerve). I was given another course of antibiotics-3000 mg. of augmentin a day, as well as some weird powder that I was to puff into my ear two times a day-and told it would take six to eight weeks for the condition to resolve itself. Having told my ENT nurse practitioner that I'd tried to research the BPPV online, she got the (correct) impression that I'm a bit of an info junkie, and advised me accordingly. When it came to the powder, she said "now, don't go looking that up on the internet. You'll only scare yourself. It's localized, just for the ear." She unnerved me enough that I didn't, in fact, look up the name of the medication on WebMD or any similar medical websites. There was no need to freak myself out any more than I already was.
Many months later, during an appointment with my quirky longtime internist, I mentioned the powder. "Oh," he said with a little smirk, "that stuff, it kills EVERYTHING."
Six to eight weeks? Try MONTHS. Try no reading for close to two months, no driving for four, as little work on the computer as possible because the nausea would come in one great wave, disabling me. Valium is a miracle drug when used properly, and in this case, it saved my life; it would ramp down my nervous system enough for the feeling of queasiness to subside, and for my body to stop moving, even when I was sitting still. But I couldn't work well while zoned on the V, and because my work involves writing and editing and being on a computer 90% of the time, I was really struggling to keep up. I took FMLA leave when necessary, cutting my work days short. The garden went untended-goodness knows S. had enough on her plate taking care of me and trying to keep the house in order, the dog walked, her sanity intact. Whatever God(s) shined upon me long ago bringing my saint of a wife into my life, I am grateful, and I thank you, million times over. I could not have made it through that time without a patient and loving partner.
Most days I just sat, staring at the garden, driving myself nuts because I could not bend to weed, let alone plant anything. I could read in short spurts, but tried to keep those times for work. July passed, then August...I'd begun physical therapy exercises to try and get the brain to overcome or compensate for the damage done to the balance nerve. The exercises seemed simple, but for me they were excruciatingly difficult: tape the word DOG to the wall, stand back three feet or so, stare at the word and move your head from side to side. Stand with your arms crossed and your eyes closed and see how long it takes before you start to fall over. Stand on a pillow and do the same thing. Walk back and forth down a hallway or long room moving my head back and forth as if I were saying NO NO NO to some invisible friend waiting to catch me should I fall. I was to do these exercises until I felt symptoms come on-which sometimes happened in 10 seconds or less-and then sit until the spinning/nausea subsided and do the exercises again. Every night for weeks on end we did the exercises; S. charted my progress in second-long increments. Without that chart, my level of frustration would have reached epic proportions. With it, I could at least see how I was, very very slowly, improving. I'd finish an exercise and S. would ask, "scale of 1-10, how nauseous are you?" and I'd give a number. By the end of the exercises, I was usually at a 6 or 7, sometimes 9. But because of the chart, I could see how I was getting less nauseous as time went on, even if it meant only dropping from a 7 to a 4 over a period of an entire month. It was
something.
No one knows, exactly, what causes VN. Mostly it's chalked up to a "virus" that attacks the nerve. I was told that any future sinus infections or bouts with upper respiratory attacks would most likely bring back my symptoms. As someone who has fought sinus infections for most of my life, this was not good news.
By October I'd hit a wall. I was getting better, but it was taking forever. My personality is such that I can be a bit of a perfectionist control freak, especially when it came to work, but I was finding that my ability to keep on top of everything was merely a semblance of what it had been pre-VN. After a typo made it through myriad edits and ended up on a printed brochure, I had a small breakdown of sorts. I couldn't keep up. I had to let go of work for awhile, get off of a computer, decrease the amount of stress in my life hundredfold and put all my energy toward recovery.
After a tearful admission to my boss and his complete blessing (I remember these words like they happened yesterday... "Who needs to give you permission to do this, Meghan? Me? Your co-workers? No, I think it's YOU that needs to give yourself permission." He was right. I packed my bags and went north to Montana for three weeks. No computer, no deadlines. Just me and the river, my ever present companion, the river that never quit.
I should mention here too that I had a comrade-in-arms throughout this ordeal-S.'s boss, I'll call her Mara, had VN too, a severe case, and it had limited her mobility and capabilities in innumerable ways. When I would feel especially bad, or experience symptoms that seemed inexplicable given the nature of the condition, I would call her
and she would affirm my suspicions, relating her experience to me, explaining, for instance, how driving a car was "the worst" because "your brain is working so hard to process the stimuli that by the time you get to point B from point A you feel like you're going to fall down." Yes, I said, tears flowing down my cheeks as I sat at my desk in my office, spinning, having just driven into work. It was only a few miles, and a pretty straight shot at that, but I felt like I'd just come off the Indy 500 track. Yes, thank you, I said, over and over. Thank you. I may have even told her that she was saving my life, but I probably kept that to myself, embarrassed. But, in essence, that's exactly what Mara
did. We only spoke a few times throughout those initial months, but without her, I think I might have-literally-lost my mind.
It took a little over a year before I felt what I would call normal. There were things I'd lost along the way, however, like my ability-something I took pride in-to multi-task. I couldn't type and have S. carry on a conversation with me, for instance...only one source of input would register. I got back on a bike a full 14 months after the first VN attack. I could take walks again, and hike, but had to be aware of my energy limitations, as that too had changed. Little by little, I started to feel like myself again. Occasionally I would have what I termed a "Law & Order," named for the sound effect used on that show between scenes, when they flash the date and place you'll see next. Kah-kunk, I'd be going along my merry little way when it felt like something reached into my head and squeezed my brain, ever so slightly, and my vision would shift, as if a dark screen was placed over it and then quickly removed. The episodes would last maybe 3-5 seconds, but they would wipe me out. I chalked it up to stress, or not eating enough, or not getting enough sleep. The Law & Orders would happen every few months or so, but I could live with them.
And then, on May 13
th, 2009, as I was turning over in bed, around 5:30 a.m., the room started spinning. The hellacious VN monster had returned.