My Dizzy Story, Pt. 1

One morning in late November 2014, it was a Thursday or Friday, my life suddenly changed forever. The world I knew was in chaos and I was in a desperate panic. I woke up as usual, to get ready for work. However, this morning the world around me was violently spinning and I became violently ill. And it didn’t stop. On the way to the bathroom floor I managed to grab my phone to call in to work — I had the flu, or…something. I had no idea, but it was bad. Eventually my wife had to get ready for work, so I managed to crawl back to bed, where I remained for the rest of the day and evening.

As usual, I had to play the organ at church that Sunday, just a couple days away. Luckily I found a substitute. My tinnitus, usually just annoying, was now off the charts, and the hearing loss I had been experiencing was worse, so I made a call on Monday to my ENT, and I was able to make an appointment for the next day or so. He and his audiologist ran a battery of rather unpleasant tests (more on those in a future post), and said my test results were as he expected, “all over the place.” So he referred me to a specialist, a neurotologist. More unpleasant tests, including a 2nd MRI of my brain (what fun!). However, just a couple months later — a diagnosis! Vestibular Neuritis?! What’s that? More on that later. “Paul can expect to experience long-term disability” the doctor wrote in his summary. What?? Is that a good thing or a bad thing??

And so it began. My new life. The day before the morning of violent vertigo was the last day I went to a full-time “day” job. Not only did the world around me look and act differently, I couldn’t concentrate, couldn’t think, couldn’t drive, I really didn’t know what I could do anymore, until this “cleared up.” I was just so…tired. I was suddenly in limbo. I went on short-term disability so I had health insurance and most of my income. But what was going to happen when that ended? Would I “recover” and be able to return to work? Everything’s no longer spinning, but why does the world look so different? Why do I feel so…I don’t know…I can’t explain….

Reality hit me pretty quickly. This was my “new normal.” The life I knew would never return. But I had no idea what my new life would be like. So many questions. So few words to explain my new world and how I was feeling.

So. You may ask, “This is all very terrible, but what is your point?” My point is simple. You never know when your life will change, without warning, in an instant. Hopefully through my story, those of you who may be struggling with a chronic illness, perhaps an Invisible Chronic Illness (ICI), perhaps even one that is disabling or debilitating, can find some hope, some advice, a word or two of recognition. “Hey, that’s how I feel, too!” Or maybe a friend or family member is struggling with something similar. Perhaps my words can help them to find comfort through your understanding and support.

So why Dizzy Fingers? As a musician, much of what I post will be about how my disability has affected and continues to effect my ability to play and perform. I hope other performing artists, not just musicians, will find my story and experiences enlightening, inspiring, maybe even familiar.

As an Ambassador for VeDA (Vestibular Disorders Association), I am tasked with being a source of help and resources for other “Vesties” (Ah! That’s what “Vestie” stands for!) and to promote awareness and education of Vestibular Disorders. But Vesties share characteristics with those who suffer from other ICIs and disabilities — emotional if not physical. So we take what we’ve learned, our successes, our failures, and share them for the good of all.

So I hope you will follow my story. No sadness, no pity, no complaints. I am lucky. I am blessed. Life is good.

Paul