True Confessions of a Long-time Lurker

violet green · 09-16-2009, 05:16 PM

True Confessions of a Long Time Lurker

I've always been the type of person who takes half an hour to submerge myself in the cool water of a lake -- and then once in, I never want to get out because it feels so good.

Well, it's been no different for me with internet forums. After a year of wandering through various specialists offices and physical therapy suites without any symptom relief, I was diagnosed with Parkinson's Disease in 2001.

From then until Spring, 2009, I read Braintalk and then NeuroTalk and many other on-line forums and appreciated all that I learned from these valuable resources.

But I never removed my lurker's cloak of invisibility until I met "Stitcher" at a conference. She urged me to get involved in some way in the PD community----and to contribute time and energy to issues that matter to people with PD. She asked if I participated in a local support group. A few years into my PD journey, I did join one, but I found their interests and mine were not in sync. After each session I felt more alone rather than supported, and I'm normally happiest in a group. After discussing other well known forum posters from the old Braintalk, "Stitcher" wisely suggested that I plunge into the NT forum as a participant, not just as a lurking reader.

So I began to post and respond to others' posts when they triggered something in me. Other people responded with thanks, and that felt good. Quite quickly, I was part of an international community -- one that has been very supportive, positive and kind. (I know that things are not always this smooth. There have been past controversies which divided folks, but now it's good.)

Posting on-line lets me "speak" heart-to-heart with others who can empathize, not just sympathize. And working together, we often solve practical problems of living, as well as one can, with PD. Patient power is strong--by communicating with others via the internet, we can share solutions, offer information, organize and advocate for changes to benefit our whole PD community.

I believe that in many parts of the world these days, people find themselves in a "me" versus "we" situation. When I was a lurker, it was just "me." Now that I'm posting, I'm feel that I'm part of "we". In my experience, I've noticed that when I'm working with others, "we" usually make much better decisions for ourselves and the larger world than when I act independently.

Please take off your lurker's cloak and give it a try. Post a response; you may feel better emotionally and who knows -- it just may help change the world of PD.

The key thing is -- until you submerge yourself by posting , you'll still be chilly. The full warmth of the community can't be felt by a lurker, it only envelops you when you write and respond.

Come on in, the water is fine!

Violet Green

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