Sunday, October 28, 2007

Life is too short for drama and petty things,
so kiss slowly, laugh insanely,
love truly
and forgive quickly.

Life is too short for drama: I have witnessed argument after argument on the CLL boards (ACOR and the Forum) and I just cannot understand the motivation, the rationale for such behavior. The newest board, the CLLC Friends, was started nearly a year ago because of the defection of several members who had a falling out with other members. Now, another member of the Forum is threatening to leave because she feels her opinions cannot be shared without sarcasm or rancor.

Life is too short for drama and petty things: After all, what is being shared is information ~~ information that we all need to know. Other times what is shared is opinion and/or personal experience. But whatever they are, they are just words on the screen. They can so easily be 'erased' if found offensive, upsetting or frustrating. One has the ability to just walk away in a very real sense. So why not? What does motivate people to harangue over small details and personal opinion or interpretation?

We need to forgive quickly: We, the members, are all the same. Our great equalizer is the disease we share. But that just doesn't seem sufficient of itself to keep people from hurting one another.

Last summer when I was hungry for information about CLL, I found the CLL Forum. Actually, I started looking for information even before I had a diagnosis, when all I had was a phrase (small clonal population in bone marrow and an appointment to see a hematologist in Boston. Recently, I heard someone say they had a degree from Google U. which is my first choice when I want to know something. So, I googled "small clonal population" and up popped a list that included many references to CLL. It was DrM. who gave me the diagnosis; it was also DrM. who advised against using the internet as an information source on CLL saying that the information on the web was "old" and "frightening". I didn't heed his advice.

I quickly became a member of the Forum, a big step for me as I had never done any kind of on-line bulletin board or chat. I lurked awhile and then took the plunge and what a response! I felt wrapped around by the warmth and friendliness of strangers ~ ~ and I learned about my disease, I began to feel less alone. Over the months, I saw and experienced the wonderful generosity of spirit as members shared their personal stories, offered advice and made suggestions. There is a great wealth of knowledge among its membership and it freely shared. One feels almost daily to be on the cusp of what is new and current in CLL. The present disagreement is about the efficacy of alternative treatments or holistic interventions and whether there is sufficient science (data) to support their use. Clearly, I just don't understand why we just cannot leave our members to their own discretion. Let those who are interested in such topics expound on them in the thread that is allocated to it. If one is not interested, one needed visit the thread.

At the ACOR site, that is not as easily done. I continue to visit ACOR but I feel less connected to it; it feels somehow less personal. For me, it is not as compelling as the Forum. And, there are a lot of rules about what is kosher to post and this stiffles what could be worthwhile and important discussion. ACOR members seem even more given to argument ... which seem to devolve into free-for-alls as folks weigh-in their opinions.
I continue to be a frequent visitor to ACOR because of the posts by Dr. Terry Hamblin whose great gift of knowledge and experience are generously shared. Now I scan topic headings and authors and read only what is of interest to me at that moment ~~ unless it is an answer by Dr. Hamblin or one of my favorite authors. And then I leave the site. Finish my internet or other computer business and walk away. And get on with my life and the business of staying healthy.
This level of angst about small things just cannot be conducive to a healthy body and mind.
What to do?

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