Post by Admin on Feb 17, 2024 19:35:41 GMT
beyondmeds.com/2024/02/17/battle-of-the-disabilities/
Battle of the disabilities: I hardly ever get out of the house. I have tics and strange movements and I often have a raging swollen face and mouth due to the infection and tardive dyskinesia that causes the tics and movements and general disability. I look bad, I move funny and I make weird noises. Very occasionally it’s all quiet enough that I venture out among the cruel humans, those members of our species, that make people whom they perceive as odd feel really bad for existing.
Once I went to a meetup group. I thought all was quiet that day.
In fact I was making the situation unbearable for someone else with a severe nervous system disorder.
I understood her and have compassion. I also think what she did wasn’t right. She kicked me out for having a disability because of HER disability. Battle of the disabilities? Hmmmm. Whatever the noise I was making I know it wasn’t loud…it was her sensitivity that made it unbearable. So, again. WTF?
How do we live in a world with more and more people needing safe spaces that, well, DO NOT EXIST? This is a real question. Please engage with sensitivity. We’re all hurting and I don’t want to bash this woman. That what she did is hightly problematic is true, I ask that you understand, however that, for whatever it’s worth, I understand her. I also was hurt by it and think what she did is wrong.
This woman had the following condition:
Misophonia:
“A strong reaction to specific sounds.” Misophonia may cause a reaction to sounds such as dripping water, chewing, snapping gum, or repetitive noises, such as pencil tapping. People with misophonia can become irritated, enraged, or even panicked when they hear their trigger sounds.
Her email to me:
Hi Monica, I am vetting everyone who joins the meetup group. You and I have already met, so, I have a dilemma. I have a condition called misophonia, I don’t know if you’ve heard of it. And you have a tic. And because of that tic, I can’t be in the same room as you. I know, I take responsibility for my condition. Certain sounds make my nerves stand on end, it’s physiological and I get into a panic, and I have to leave the room to get away from the sound, or worse, say something I wish I hadn’t. And I know it is beyond your control. So as much as I would like everyone who exhibits an interest to be able to join, in our case, you and me, we are not compatible. I wish it could be different, but I won’t be ok. And as Organizer, I can’t not show up. But I am content to know that you belong to another spiritual group that meets at noon, and I hope that meets your needs and fills your soul. I hope you understand that I can’t control mine either. Sometimes life is inconvenient. Thanks for understanding.
This was my response to her. I kept it simple:
Hi. Yes, I know what misophonia is. I have it. Along with tics and about 1000 other bizarre parasite related symptoms. This is all stuff associated with Lyme, multiple systemic infections and tardive dyskinesia for me. I’ve come to view all this stuff as foundationally microbiome related. In any case I understand. I wish you the best. Monica
I hope we might discuss this here and/or on Facebook, where I will also post it. It brings up so many issues.
The question, again, is
“How do we live in a world with more and more people needing safe spaces that DO NOT EXIST?”
I just found this image while looking for something for the header. It’s very much the crux of the issue for the individual, isn’t it?
Battle of the disabilities: I hardly ever get out of the house. I have tics and strange movements and I often have a raging swollen face and mouth due to the infection and tardive dyskinesia that causes the tics and movements and general disability. I look bad, I move funny and I make weird noises. Very occasionally it’s all quiet enough that I venture out among the cruel humans, those members of our species, that make people whom they perceive as odd feel really bad for existing.
Once I went to a meetup group. I thought all was quiet that day.
In fact I was making the situation unbearable for someone else with a severe nervous system disorder.
I understood her and have compassion. I also think what she did wasn’t right. She kicked me out for having a disability because of HER disability. Battle of the disabilities? Hmmmm. Whatever the noise I was making I know it wasn’t loud…it was her sensitivity that made it unbearable. So, again. WTF?
How do we live in a world with more and more people needing safe spaces that, well, DO NOT EXIST? This is a real question. Please engage with sensitivity. We’re all hurting and I don’t want to bash this woman. That what she did is hightly problematic is true, I ask that you understand, however that, for whatever it’s worth, I understand her. I also was hurt by it and think what she did is wrong.
This woman had the following condition:
Misophonia:
“A strong reaction to specific sounds.” Misophonia may cause a reaction to sounds such as dripping water, chewing, snapping gum, or repetitive noises, such as pencil tapping. People with misophonia can become irritated, enraged, or even panicked when they hear their trigger sounds.
Her email to me:
Hi Monica, I am vetting everyone who joins the meetup group. You and I have already met, so, I have a dilemma. I have a condition called misophonia, I don’t know if you’ve heard of it. And you have a tic. And because of that tic, I can’t be in the same room as you. I know, I take responsibility for my condition. Certain sounds make my nerves stand on end, it’s physiological and I get into a panic, and I have to leave the room to get away from the sound, or worse, say something I wish I hadn’t. And I know it is beyond your control. So as much as I would like everyone who exhibits an interest to be able to join, in our case, you and me, we are not compatible. I wish it could be different, but I won’t be ok. And as Organizer, I can’t not show up. But I am content to know that you belong to another spiritual group that meets at noon, and I hope that meets your needs and fills your soul. I hope you understand that I can’t control mine either. Sometimes life is inconvenient. Thanks for understanding.
This was my response to her. I kept it simple:
Hi. Yes, I know what misophonia is. I have it. Along with tics and about 1000 other bizarre parasite related symptoms. This is all stuff associated with Lyme, multiple systemic infections and tardive dyskinesia for me. I’ve come to view all this stuff as foundationally microbiome related. In any case I understand. I wish you the best. Monica
I hope we might discuss this here and/or on Facebook, where I will also post it. It brings up so many issues.
The question, again, is
“How do we live in a world with more and more people needing safe spaces that DO NOT EXIST?”
I just found this image while looking for something for the header. It’s very much the crux of the issue for the individual, isn’t it?