It was over a girl. There I said it. That is the honest truth. I quit the Facebook BFS support groups and Facebook altogether, over a girl.
That story would take more time than I have allotted myself for this particular post (the length of a commercial break for Shark Tank). So, I will cut straight to the quick about the BFS support groups on Facebook. They are useful until they aren’t.
Sometime, around the second year of “the twitch”, I decided to be one of “those” people and join a BFS support group. Initially, I was over the moon with excitement. There were literally thousands of people just like me on these groups. It must be what a gay man in 1950’s Iowa felt like on a trip to San Francisco. For the first time in over a year I felt like I was not alone.
Currently, there are three BFS sites on Facebook. There is what I call the ‘A List’ site that consists of about 1000 members. This site is heavily monitored by three administrators who take their job a little too seriously. So seriously in fact, that the last time I joined the group I was told that my Facebook “raised some eyebrows” with some members of the group. I’m sorry, but, what the fuck? Raised some eyebrows? I’m not sure who they thought I was leaking information about buttock twitches to, but come on!
The other two sites are the B and C List support groups. On those you will see a lot more unadorned ALS panic videos and a lot of people displaying their mental illness to perfect strangers (not unlike this blog…hmmm).
The notion, that posting your nightly freak out over the fasciculations would either lend you some catharsis release or help one of your compatriots understand the disease, is well, for lack of a better phrase, fucking ridiculous.
In short, the image maintenance and personal branding engine that is Facebook, had finally gotten to me. My genuine desire to connect with people in a real and meaningful way had been replaced by a series of thumbs up, pithy and meaningless comments and a series of midnight rants carried out by scared hypochondriacs.
So, that leaves me here, alone in a house in Rhode Island with no one to talk to. Instead, I have decided to speak directly to you. You being that one person who searched for a blog to help you understand this rare and frightening condition.
Free of likes, comments and profile selfies.
Just some honest thoughts.