"We classify ourselves into vocations, each of which either wields some particular tool, or sells it, or repairs it, or sharpens it, or dispenses advice on how to do so; by such divisions of labor we avoid responsibility for the misuse of any tool save our own. but there is one vocation--Philosophy --which knows that all men, by what they think about and wish for, in effect wield all tools. It knows that men thus determine, by their manner of thinking and wishing, whether it is worth while to wield any." ....Aldo Leopold
The Support Group Meeting.. we were on time. We divided and conquered, me at the doors and Far Guy in the meeting room. Everyone was welcomed, 9 people with TN out of a possible 21..it would have been asking way to much for the two living out of the area to come, and the five that are deceased were excused too! Yes, the numbers are at 28.. the numbers grow everyday. I moderated a round table discussion, encouraging them to share. The stories are all sadly familiar. The seven women out numbered the two men present. Everyone has a different doctor. They are angry, frustrated and looking for answers. The five spouses and one grandmother that attended showed such compassion and strength for their loved ones with TN. Two gals had the brain surgery..called an MVD..they are pleased to be rid of the pain..they shared that before the surgery they were at their wits end.. and could not live with the pain any longer..one is still on a very high dose of medications, the other on a very low dose. Both feel some numbness in their face and head. But they shared the fact that they had their lives back. Other people shared that their Doctors did not advise surgery because the end result could be worse than the pain they are feeling now.
I shared with them the book "Striking Back" a bible of sorts for TN..written by a Doctor that has TN. I offered them support..they all have our phone number and some even wanted our email ..which I gladly gave them. I offered them the option of meeting again. They agreed to meet again next month. They wanted me as the lead loud mouth to continue as their leader. I politely declined. That news was not well received.
I cannot emotionally carry enough tools to help them all. I can barely carry enough tools to help Far Guy. I feel badly about their situations...especially the young Mom who is having trouble being diagnosed, and the elderly lady who might have it..apparently her Doctor feels she does because she is on the same medication as the others but without any recommendations to up the dose..so she still suffers..undiagnosed..we told this elderly couple to go back to their Doctor... soon.
I am confident that I gave them enough tools to go to work on their own, as a group they can support each other, they can reach out to each other. They can help each other, education and information shared is a beginning.
Do I feel wonderful? NO. Am I pleased ..not exactly. If they pick up the tools and get to work I will be. We just have to wait and see. I did the best I could, I have accomplished my goal.. I set out to raise public awareness and form a support group..I did, it was like pulling teeth there for awhile..but I accomplished my mission.
I would like to thank all of my readers that have been following this mission from it's beginning, with out your comments and support I would not have made it through. Your supportive comments yesterday were just what I needed to forge on through a difficult day. Old lady from Minnesota giving her readers a standing ovation:)