Today I did something new. I attended a Lyme Disease Support Group.
First let me preface this by saying you may have seen me post about one here in my county. I have, I have! But it was in Adams and it was close to my time getting out of work and it was on the 3rd Thursday of the month and my hometown Pittsfield here has Third Thursday Street Festivals that my son LOVES …. blah-blah-blah. I just could not go.
NOW it is here in town on Saturdays. Today I went.
I met a great bunch of people face to face, people who are knowledgeable without being know-it-alls, helpful without trying to be saviors, supportive without being too much. The facilitator Kenneth did a great job driving the meeting. He let us newbies know that it is not structured, that we can talk about what we want and that there aren’t really any rules. This was wonderful news — and bad news, maybe. I have attention issues and there were a lot of sidebar conversations down the table that I was unable to filter out. I could see other attendees glaring at the Lyme Whisperers, but theses conversationalists were oblivious.
But the beauty of this, I guess, is that these people are welcome as equally as I am. They have needs. They need information. They are just as entitled to help and support as anyone else. Here we all are, sitting at this long table upstairs in the library helping each other : and tolerating each other’s quirks.
There are educational materials laid out — some are signs to hang up at work or where-have-you with blurbs about checking for ticks and so forth. Some are articles long enough to require staples. Some are brochures.
Attendees ranged from people who were diagnosed in the ’90’s to people who just learned the name of their mysterious symptoms. They were male, female and ranged in age from 20 to retirees. Spouses and significant others were there for more information.
We discussed everything from how to find a LLMD to supplements to offbeat treatments to symptoms themselves (and ours varied quite a bit) to unconventional methods of dealing with symptoms to co-infections to book titles and names of doctors to how to get results in the medical world.
I think one of the more newly diagnosed found our collective state to be rather appalling. She would get a bewildered look on her face, and look at her husband across the table and shake her head. She said something – I forget what – that indicated she found this hopeless.
But I think we all managed to get across this: we are ALL better having been diagnosed and treated than we were when we were out there in LaLa Land trying to find out what was wrong. I know that I no longer have heart issues and I no longer wake up at night not breathing. It also serves a purpose in my spiritual journey, in The Plan. I’ve learned lessons I needed to learn, lessons that have made me a better person. I mentioned this and Kenneth passed me a piece of paper with an author’s name on it: Katina Makris. Having googled her, I see she is here on WordPress! http://katinamakris.wordpress.com/ Ken talked about how it has empowered him to become a vocal advocate, to get out there and do something about it. He said that we could “have” Lyme Disease without being the sum of our illness.
The meeting was informative and helpful and I wish this group existed when I was newly diagnosed some 5 years ago. It gives everyone in the room a little piece of something they need.
If you have an opportunity to attend a support group, I highly recommend it.
Ours is here in Pittsfield, Massachusetts :
Lyme Disease Support Group hosted by the Lyme Alliance of the Berkshires.
People without Lyme are welcome — whether they are friends or family members or simply curious citizens or potential advocates.
The next two meetings are Saturday September 21st 2013 and Saturday October 19th , 2013. Meetings start at noon. Today’s ended near 3PM. I’m not sure how long they last. Why don’t you come and find out?
It takes place at the Berkshire Athenaeum in the 2nd Floor Conference Room. Address if you’re coming from out of town: 1 Wendell Avenue, Pittsfield, MA 01201 (on the corner of Wendell and East Streets ). Unfortunately the library prohibits food and drink.
For more information contact me and once I determine you’re not a spammer or a robot, I will divulge their email address. 🙂 Or check the website.