The Mid-Atlantic AVM Survivors Meet-Up (6/30/2012) was very exciting. It took an hour and a half before people other than I, my boyfriend, and the hostess showed up, but after a while, a few people came, and it was great to have been able to meet and talk to people who went through the same kinds of problems I did, with the same medical diagnosis, in person.
I have never met anyone who had an AVM before today, so it was a great experience to be able to talk to people who knew what I was talking about, face to face.
I’ve talked to a lot of people who have had “similar experiences,” or maybe invasive surgeries, have seizure disorders, and many parts and pieces of what I’ve gone through in the past year, but it was maybe a little comforting to find that there are people with my exact diagnosis (1 in 100,000 people is hard to find from just daily encounters), having had to make the same kind of decisions I did (whether they made the same one I made or different was also an interesting topic), and how they are living now, months, years, a decade after it all.
One lady came all the way from Delaware, another from Virginia… All the way to us through all the rubble and power outages from last night’s huge (unexpected) storm. What dedication. I would probably have turned back and hoped to be invited another day!
I met so many strong and remarkable people today, and I hope to see them again and get to know them better in the coming meet ups that were promised. :)
Thank you so much for organizing the event, Leslye!
(And the wraps were delicious… next time I hope I can stay for the cake, too! I took the photo of the cake and had to leave before it…)
The event left me very exhausted and with a headache that still hasn’t gone away after 2 hours- not sure what’s up with this…
Maybe my brain was resonating with the other brains… “Hey!! WE ARE EXPERIENCE BUDDIES! WE ALL WENT THROUGH THIS!!”