 |
 |
Now wait a minute! I was just beginning to think that I was part of something when this new fray began. Heck, I listened(and sometimes responded)during the stem cell todo and read the postings re the political arena. Now because of poor taste on some members' parts, and threats on other members' parts, this list is beginning to disintegrate. Can't be allowed. Fighting for what is right does not mean giving up. It means putting on the boxing gloves to protect something that has enabled you to make your one day at a time. None of you I've listened to during my short time on the list has survived this way. You've battled this insidious disease in most creative ways. Now is NOT the time to give up! Now, understand, that doesn't mean we can't make some changes. For example, some criticism refers to a lack of concentrated PD news. Easy answer. Those members can move over to PD News. All the fluff is gone; all the latest scientific information, all the latest re PD is found there. Another criticism has been about some bad-taste offerings(and I side with the critics here). No problem. We, that is WE, develop a set of understandings for this list that we all agree to respect. Everyone who is on the list is sent this set of understandings. Anyone who doesn't agree can leave voluntarily or can be removed. The third criticism pertains to the chitter chatter, the comraderie of this list. Others may not agree(you are certainly permitted)but here's how I see this part of the list. Unlike the scientific information that gives us hope for ten years down the lane, comraderie is every day. It is someone's ability to touch base with others who feel the same way. It is encouragement. It is a touch of the real world. It is being fearful all night or harried all day. It is not knowing if one can make it through. Yet just a simple few keys of the PC, a note from an unseen friend, and the strength and courage to face this insidious disease head on returns. For even a brief time the black hole of PD is covered with light! Comraderie is part of this list and belongs here! We are basically an intelligent lot(patents and caregivers). Experienced. Educated. Sometimes cliquish. Often possessive, especially when it comes to this list. Why, do you suppose? Because it is something to hold tightly for it brings a belonging? Because unanswered questions burn in our brains? Because movement becomes more difficult, and we're trying to survive the day? Because quality of life is vanishing before our very eyes? Because we can no longer handle the frustration? Because we want someone out there, whether it be patient's or caregiver's need, to "touch" us, to let us know that we are not alone? Because we pretty much know our futures, and there's an aloneness and a void that cannot be happily filled? Or because we feel ownership, friendship and kinship toward something that brings us together that offers stability(it should, once did)? Each of us, I'm sure has his/her own response. Having said this, let me also say that many stand at the gate who don't feel they belong. They don't feel a part of what is transpiring If they're not interested in SPARKLE or PD NEWS, they may want to get through the gate to the List. Those who know their way, need to push open that gate. They need to share the comraderie and information on coping skills which are so graciously shared here on the list. Those who know their way need to mentor the newly diagnosed, allay fears, be available for sometimes there is no one else who seems to understand. Don't give up, my friends. Be patient. Fight this fight. We need each other. Along with learning the latest PD information, we need a place where PDers, PD+ers and all the PD relatives can feel free to be themselves! Respectively submitted, E of the headdress