This past Friday, my doctor told me I have Ménière’s disease. These two words explained a week of incessant, high-pitched ringing and pulse-throbbing pressure in my left ear, an unsteady gait when walking, and a counter-clockwise swirling of the room following any rapid movement of my head. The only action that seemed to curb it was sleeping, which is what I did. While there was much to be done, I felt like doing NOTHING!
Of course, I indulged in self-diagnosis in between waves of vertigo. Was it the result of too much coffee? Too little down-time? A simple case of the flu? I settled on three possibilities: an inoperable brain tumor (in deference to my mother – may God rest her soul – who believed in establishing an extremely severe alternative no matter how unlikely so that almost any diagnosis made by the doctor would be good news in comparison); an ear infection (where my bets were placed); and wax build-up in the ear canal (I knew this one was a long-shot, but it at least served as a balance to the first choice). Ménière’s disease?! Never heard of it!
“What is it?” I asked. The doctor offered an explanation: no one knows what causes it…could be genetic…could be a virus…there is no cure…it comes and goes unpredictably…you have atypical vestibular Ménière’s disease because you are not experiencing hearing loss in the left ear…long term prognosis is that you probably will have total, permanent hearing loss…severe vertigo can be incapacitating due to nausea and vomiting…can only treat the symptoms…surgery works in some cases to lessen vertigo. In the meantime, here is a prescription for 25mg of Meclizine to reduce dizziness…the side-effects include feeling lightheaded, sleepy, having blurred vision, change in thinking clearly…avoid driving, doing other tasks or activities that require alertness or clear vision. Anything else I can do for you?
I entered into the privacy of the doctor’s office aware of my very real, but unspecified condition. It was real because I physically and mentally experienced its consequences. And in that moment it was mine alone. No one else knew what I had or how I was affected by it, not even my wife who accompanied me. However, the doctor gave it a name. He now knew, my wife knew, and I knew and I was no longer alone with the unknowable.
The mere fact that it was symbolized with letters gave it a virtual existence extending far beyond me and touching the millions of others who have the same condition. This virtualization gives me access to the experiences, knowledge, empathy, and understanding of others; and they to mine. Because of a name, Ménière’s disease, such widespread connectedness becomes a powerful way for me to learn about myself and the result may carry far beyond the bounds of the condition. So, to start…
A Google search on the term, “Ménière’s disease” yields 667,000 results. A search of Amazon generates two pages of books, journals, magazines, even herbal medicines. There are 28 Yahoo! Groups and 3 Google Groups and almost 2700 groups across the Internet dedicated to the Ménière’s-related topics such as tinnitus, vertigo / dizziness, vestibular virus, etc. There are countless variations on how Ménière’s manifests itself and what people who have it do in response. The choices are many, ranging from pharmacological prescriptions to alternative medicines, and from low-salt diets to surgery.
It is almost impossible NOT to get connected. Clearly, I don’t know what’s next for me with Ménière’s — I could have another episode tomorrow or I could never have another one. At the moment I have no vertigo, no hearing loss, no spinning computer screen, no pressure in the ear, only a slight ringing. The prescription for Meclizine is filled, but unused. So in the moment, I go on reading more, asking more, learning more. And even if I don’t have call to use this knowledge for myself, I have it at hand in case others I meet or know are afflicted with similar symptoms and diagnoses. This potential for learning together in the future marks a distinct value of virtualization. If and when Ménière’s strikes again and the realization of the condition hits me hard, I thank all of you in the vast global network in advance for imparting your knowledge and wisdom and making me a better person for it!
Originally posted to New Media Explorer by Steve Bosserman on Saturday, October 22, 2005 and updated on Monday, October 24, 2005