Once again, I don't relate well to others
I've belonged to a couple of mail lists (remember those?) that are dedicated to people who have been damaged by gentamicin and have become wobblers -- gentamicin and other antibiotics known as aminoglycosides can destroy the vestibular system of your inner ear, and leave you with no sense of balance, so you stagger around like you're drunk. Thus, the name "wobblers". I've been on these lists for 11 years now.
Any group of people are going to have dust-ups sooner or later, and I've talked about these in my regular journal before. But this most recent one has taken the cake, and I'm ready to just tell them, "Screw you guys, I'm going home."
On these lists, there are three things we do not talk about: religion, politics, and BrainPort. The BrainPort is a device that tried to get FDA approval several years ago as a prosthesis of sorts for the vestibular system, which is what gives you your sense of balance, and which is what gentamicin destroys when you become a wobbler. It's this thing you wear on your head, and you have a sensor you hold in your mouth on your tongue, and supposedly by small electric "tingles" on your tongue you learn how to adapt to no balance.
Well, you can do that without looking like a moron with a cord hanging out of your mouth. It's called "vestibular rehab", and you get it at dizziness & balance centers. I had mine at Emory University in Atlanta. There are many others, most notably Dr Timothy Hain in Chicago, who pretty much wrote the book on bilateral vestibulopathy.
The BrainPort did not receive FDA approval because testing proved it didn't work. Double-blind testing showed it was nothing but a placebo effect, if there was any improvement shown at all. The device cost more than $10,000, and then didn't work. The company actually declared bankruptcy, then reorganized and have been developing the device for letting the blind "see" their environment. This is actually working, and they're proceeding nicely through FDA approval; it just doesn't work for vestibulopathy.
So the founder of our mail lists, Lynn Brown, said that the BP would not be discussed on the lists. No one had a problem with this. When new wobblers came along, the old wobblers would tell them "We don't discuss that," and the newbies would say, "Oh, okay, I didn't know," and everything went along.
Until yesterday. Some noob posted about how wonderful and exciting the BrainPort could be and how we should all get behind this device and push for it to be made available. I posted:
The founder of the wobblers mail lists, Lynn Brown, has explicitly asked we do not discuss the Brainport, mostly because it doesn't work.
Lorri
GA 12/04
Oh. My. God. You'd have thought I'd said that wobblers need to eat puppies alive and tear the heads off screaming kittens. I was accused of being autocratic, trying to take control, not being helpful, not being a "Fit" Wobbler, whatever the hell that is, and of making things up because I was too lazy to try anything new.
I kept saying, "No, this is per Lynn Brown's wishes. Besides, it doesn't work." And the shrieking and wailing continued. I notified the admin of the lists that they weren't backing down. He's had me moderate the lists in the pasts, and he thanked me for stepping in, and asked me to keep an eye on it for him.
So I did. And when people started getting in a snit and leaving because "these lists aren't being run as a democracy!!!!" and such silliness, I let him know. So he had to post on the list today, basically saying the same thing I had.
Even then, people aren't understanding. I'm over it. Most of the people I knew are dead and gone, and wobblers just is no fun anymore. There's no new information, just more and more new wobblers. So I wrote this tonight:
I just want to say that I never meant to offend people to the point where they felt leaving the group was the best option. Private email to discuss things that aren't allowed on the lists is always the best option.
A bit about me and my apparent gift for pissing people off -- I'm on the autism scale. I have what some are familiar with as Asperger's Syndrome, which is a very mild form of autism.
Because of that, I tend to not relate to people very well. I can be very didactic and literal. When I take a position, it's hard to shift me from it. This is something I've struggled with all my life. I've never been able to figure out how to relate to neurotypical people (NTs) without monumentally pissing them off sooner or later.
Because of this, I can sound terse, short, and argumentative. I don't mean to be. I'm simply pointing out something in as few words as possible, because words can cause me problems. I get caught up in details and lose sight of the bigger picture.
Witness the recent BrainPort Scuffle -- my concern was purely that it was not an allowed topic. I wasn't casting aspersions on anyone regarding anything at all. I knew there were new wobblers here, and that you didn't know the rules. I was merely making those rules known.
Obviously my mild autism has caused nothing but trouble here, so I'm going to go back to being one of the lurkers who never posts. I might even just delete these emails without reading. I find no pleasure in fighting with people who have skills I don't.
Kicked out of another group because I just don't know how to fit in and play nice with people, I guess.
See ya.
Lorri
GA 12/04
I'm just tired of trying to figure out how to say things without offending people who wear their feelings on their sleeves. All I ever said was:
The founder of the wobblers mail lists, Lynn Brown, has explicitly asked we do not discuss the Brainport, mostly because it doesn't work.
Lorri
GA 12/04
How this got twisted into "Lorri's taking over the lists and she thinks she's the BOSS of us!!!!" I have no idea. And I really don't care. I believe in a minute I'm just going to quietly send an unsubscribe to the list -- I feel no need to post in the group that I'm unsubbing.
I just don't have the time or energy anymore. They can figure it out without me.
Any group of people are going to have dust-ups sooner or later, and I've talked about these in my regular journal before. But this most recent one has taken the cake, and I'm ready to just tell them, "Screw you guys, I'm going home."
On these lists, there are three things we do not talk about: religion, politics, and BrainPort. The BrainPort is a device that tried to get FDA approval several years ago as a prosthesis of sorts for the vestibular system, which is what gives you your sense of balance, and which is what gentamicin destroys when you become a wobbler. It's this thing you wear on your head, and you have a sensor you hold in your mouth on your tongue, and supposedly by small electric "tingles" on your tongue you learn how to adapt to no balance.
Well, you can do that without looking like a moron with a cord hanging out of your mouth. It's called "vestibular rehab", and you get it at dizziness & balance centers. I had mine at Emory University in Atlanta. There are many others, most notably Dr Timothy Hain in Chicago, who pretty much wrote the book on bilateral vestibulopathy.
The BrainPort did not receive FDA approval because testing proved it didn't work. Double-blind testing showed it was nothing but a placebo effect, if there was any improvement shown at all. The device cost more than $10,000, and then didn't work. The company actually declared bankruptcy, then reorganized and have been developing the device for letting the blind "see" their environment. This is actually working, and they're proceeding nicely through FDA approval; it just doesn't work for vestibulopathy.
So the founder of our mail lists, Lynn Brown, said that the BP would not be discussed on the lists. No one had a problem with this. When new wobblers came along, the old wobblers would tell them "We don't discuss that," and the newbies would say, "Oh, okay, I didn't know," and everything went along.
Until yesterday. Some noob posted about how wonderful and exciting the BrainPort could be and how we should all get behind this device and push for it to be made available. I posted:
The founder of the wobblers mail lists, Lynn Brown, has explicitly asked we do not discuss the Brainport, mostly because it doesn't work.
Lorri
GA 12/04
Oh. My. God. You'd have thought I'd said that wobblers need to eat puppies alive and tear the heads off screaming kittens. I was accused of being autocratic, trying to take control, not being helpful, not being a "Fit" Wobbler, whatever the hell that is, and of making things up because I was too lazy to try anything new.
I kept saying, "No, this is per Lynn Brown's wishes. Besides, it doesn't work." And the shrieking and wailing continued. I notified the admin of the lists that they weren't backing down. He's had me moderate the lists in the pasts, and he thanked me for stepping in, and asked me to keep an eye on it for him.
So I did. And when people started getting in a snit and leaving because "these lists aren't being run as a democracy!!!!" and such silliness, I let him know. So he had to post on the list today, basically saying the same thing I had.
Even then, people aren't understanding. I'm over it. Most of the people I knew are dead and gone, and wobblers just is no fun anymore. There's no new information, just more and more new wobblers. So I wrote this tonight:
I just want to say that I never meant to offend people to the point where they felt leaving the group was the best option. Private email to discuss things that aren't allowed on the lists is always the best option.
A bit about me and my apparent gift for pissing people off -- I'm on the autism scale. I have what some are familiar with as Asperger's Syndrome, which is a very mild form of autism.
Because of that, I tend to not relate to people very well. I can be very didactic and literal. When I take a position, it's hard to shift me from it. This is something I've struggled with all my life. I've never been able to figure out how to relate to neurotypical people (NTs) without monumentally pissing them off sooner or later.
Because of this, I can sound terse, short, and argumentative. I don't mean to be. I'm simply pointing out something in as few words as possible, because words can cause me problems. I get caught up in details and lose sight of the bigger picture.
Witness the recent BrainPort Scuffle -- my concern was purely that it was not an allowed topic. I wasn't casting aspersions on anyone regarding anything at all. I knew there were new wobblers here, and that you didn't know the rules. I was merely making those rules known.
Obviously my mild autism has caused nothing but trouble here, so I'm going to go back to being one of the lurkers who never posts. I might even just delete these emails without reading. I find no pleasure in fighting with people who have skills I don't.
Kicked out of another group because I just don't know how to fit in and play nice with people, I guess.
See ya.
Lorri
GA 12/04
I'm just tired of trying to figure out how to say things without offending people who wear their feelings on their sleeves. All I ever said was:
The founder of the wobblers mail lists, Lynn Brown, has explicitly asked we do not discuss the Brainport, mostly because it doesn't work.
Lorri
GA 12/04
How this got twisted into "Lorri's taking over the lists and she thinks she's the BOSS of us!!!!" I have no idea. And I really don't care. I believe in a minute I'm just going to quietly send an unsubscribe to the list -- I feel no need to post in the group that I'm unsubbing.
I just don't have the time or energy anymore. They can figure it out without me.