Virginia Support Group
Pamela New
wnew[AT SIGN]erols.com

The Virginia TM Support Group started out with three “TMers” and their spouses meeting for lunch in Williamsburg, the colonial capitol of Virginia. Having corresponded only via email, my husband and I sat in the lobby of The Williamsburg Lodge, one of the restaurants in the restored area, looking around for others who looked like they might have TM. I admit this was a weird, unfair, perhaps irrational approach. I didn’t look any different; why would they.  Ron knew that I used a cane and I knew that he did. We both used walkers off and on. Jesse used a walker.  We found each other.

After being seated for lunch, we talked about TM, our families, and general stuff. Our waitress was great. The food was good. The atmosphere was wonderful. So, the six of us sat there for four hours talking about when TM affected us and how, what we missed the most, and how it wasn’t fair. The two of them didn’t have the same “Why me? This really isn’t fair” period which I was still going through after nearly five years! They appeared to me to have adjusted to their TM limitations more readily than I. Ron and Rachel made reference to the fact that I was their daughter’s age and that I had missed out on so much in my life. So what if I had? I can’t change it. We agreed to meet again after the holidays.

Our second meeting ended up being a lunch with Ron and Rachel, Bill and I. We learned that discussing bodily functions in public was not a good idea. Other than that, things were okay. The discussion at this meeting focused on the caregiver. It was good for Bill and Rachel to have time to talk. I know that it is difficult to care for persons with a chronic illness. As a nurse, I used to see it when I worked. I could never see it from Bill’s perspective anymore than he could see TM from mine. It was good for us to have the opportunity to talk with the two of them on a focused topic. It is really amazing how TM affects everyone within a family or within a group of friends. At times, it really feels like TM consumes everything around you even though you promise yourself that you are beyond that. The caregiver support is essential. The conversation of that day was extremely helpful not only to me but to Bill. I had to work at making him see that I would not want him to have TM as a way of making me better. No one should ever have this illness. This seemed to be a common theme at future meetings, as well as emails received after the meeting.

By March, we had a total of 20 at our meeting! This was pretty exciting for all of us. Email contact is nice for the day- to-day, I need a hug, are you there communications. This meeting allowed us to put faces to Cookielady11, jnsmith, rhutton6, MillerGH. The computer age is fascinating, if only to connect us to friends we haven’t met. Our set topic on pain management was mentioned briefly at my end of the table and I believe I may have heard it at the other end, as well. I don’t think pain was a problem for many of us on this day. We were just a group of friends with their spouses, having lunch and getting to know one another. I was in awe how the two words, “I’m new” in a subject line in an email could go so far. These are the words in the subject line of the messages sent to me by new members from the Virginia Support Group.  We decided our next meeting would be in two months.

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May in Charlottesville; how gorgeous. John volunteered to do the planning and organizing for the May meeting.  We discussed ways to reach more people in Virginia since Virginia is such a large state. This is something that we are still working on. Support is important. People are important. Numbers are insignificant. Webster’s defines a group as “two or more individuals assembled together or having some unifying relationship.” This is US.

Please send me an Email or call, if you are interested in getting involved in our group.  I know that some people prefer quiet, private ways of dealing with illness.

Planning for our July 27 meeting was a little more difficult for me than previous meetings. I wasn’t sure what the difference was until my son asked me if TM was hereditary. I think that his fear in spite of his knowledge of TM really put things into a different perspective for me. This is a child who has had to grow up very fast over the past five years since my TM first appeared in May 1997. He just turned 12 in March 1997. He now knows enough about TM to manage fundraisers, to educate his teachers and bosses, RN’s in emergency rooms, and emergency room doctors who know little about it. He and his brother and sister know how to care for mom, which side is numb, which car the walker should be in, when to help with cooking and when not to help. They know more about neurology than any kids should. This is where a support group comes in. This helps me help them. Webster’s dictionary defines support several ways. These include, “to make more pleasant or bearable, to give assistance to, and to keep from losing courage.” All of these meanings make the two words “I’m new” take on more significance each and every day in my life.