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Dear Friends:
Perhaps I am not the right person to bring this up as I have only 34 posts on this site but I would like to open a dialogue on what grief and loss can do to this community.
First off, grief is a necessary part of life. It is completely appropriate to feel grief when we lost so many community members so quickly. Everybody should take some time to reflect on what the losses means to us.
I hope the events of the last few days brings everybody together in this community, as opposed to drifting away from each other. Many people will feel pain at the loss of our friends and will begin to fade away from this community in order to protect themselves from even more pain which will surely come. Sometimes the best way to get through psychic pain is to lean into the pain. Go towards the pain instead of away from it.
I would like to suggest that coming towards each other in this community may be a better and healthier way to deal with the emotions of loss. I know it is counter-intuitive, but instead of having a quieter community with less posting, maybe you are better off becoming more active here.
I belong to another web community for an extremely rare disease called Guillain-Barre' Syndrome (GBS) which I was a victim of and which left me paralyzed for several months. We had several deaths in the community over the course of a week or so and it left the community drained and emotionally exhausted. Nobody went to the chat room anymore and more and more threads were posted but were unanswered. For almost a year, our community fell apart. We were all awakened back into action when the Guillain Barre' International Foundation found that there was a slight increase in the death rate from GBS during the year that we took off. The increase in the death rate shocked us back into action.
We never knew that we were making a real and positive difference. Our suicide prevention programs were effective. Our calls to get immediate medical service did prompt people to get to the hospital before it was too late. And our pleas for patients to be their own medical advocates did result in better medical care for the victims of GBS.
All of you are serving an extremely important function. I came to this site for knowledge so that I could help my wife would make the wisest and soundest medical decisions she could. I got that here in the form of first hand knowledge from people who actually lived through this ordeal. You have really made a difference.
I sort of promised myself that I wouldn't get involved in this community and just be a lurker, but I am a sucker for brave people and people of character. I hope all of you renew your efforts here. What you do here is important.
Lee
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