Ménière’s Disease: Requiem for My Left Ear

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

Welcome

Welcome to my blogsite, Diary of a Knowledge Broker. It is often by quite circuitous and coincidental routes people find one another: the results of Googling, an email reference, a URL embedded in another article or posted on a website. Whatever the case, I am glad you are here. Feel encouraged through the postings on this site to find your voice, ask yourself the next right question to further your individual search for what is true, and witness to the truth as you experience it so that others may have the opportunity to benefit from what you now know. This blog is as good as you and others respond with comments on this site or positive action in your lives. Participation, regardless of means, is the central theme!

I, too, am glad to be here. This is perhaps as unexpected an occasion for me as it is for you. This past June, I attended the Open Culture conference in Milan, Italy. As with most conferences, I go because someone else is there I want to meet. The person who invited me was Andrius Kulikauskas, founder of Minciu Sodas a social networking organization based in Lithuania. He and I knew one another from email exchanges, but had not met in person. This conference gave us a face-to-face convening point.

As in all social situations, having the opportunity to talk with one person may have been a compelling reason for going in the first place; but once there one meets so many others. One of these was Robin Good. You see Robin’s picture in the top, left-hand corner of the Communication Agents homepage. If you click it you will be led to Robin’s various websites starting with MasterNewMedia and moving to others such as Kolabora and MasterViews.

It is quickly obvious that Robin is heavily involved in Information Communication Technology (ICT). His passion for these technologies and associated tools is borne out in his presentations on the subject. Robin gave one of them entitled, “The Long Tail,” based on the work of Chris Anderson, at the Open Culture conference. His content knowledge, hands-on experience, and overt passion concerning what ICT is and how it functions triggered my excitement about the impact advances in ICT would have on people, especially in their relationships to one another in their personal development, their work, and their communities. As Robin and I discovered what the other was doing, the complementary aspects of our work became obvious. The result was an invitation to join the ranks of Communication Agents, to which I accepted. And that brings me here. My heartfelt thanks to Robin for making this opportunity possible—this a precious gift, indeed!

I describe myself as a “knowledge broker.” With the pervasiveness of ICT capabilities, the roles we play in our work and relationships to one another are a complex mix of saying our truths, aggregating these diverse points of truth into recognizable frameworks of patterns, and putting theories into action we believe will influence the patterns we see and experience. Knowledge brokers move easily and freely among these three roles depending upon the current circumstances in which they find themselves. My fellow communication agents— Sepp, Chris, Tom, Rinaldo, Ivan, Emma, and Robin —are excellent examples of knowledge brokers. The content of their posts pertains to topics of vital interest to each of us. Their perspectives span the full breadth of a knowledge broker’s world and speak about truth, patterns, or action. Please invite them into your mind and heart and give them a read.

Regardless of what brings us to this point, I am looking forward to our interactions, knowing your truth, and seeing where this leads us!

Steve Bosserman

Originally posted to New Media Explorer by Steve Bosserman on Thursday, August 25, 2005 and updated on Saturday, September 24, 2005