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The "Butterfly's Whisper" Blog

Welcome to my blog. I hope by sharing my own misophonia experiences, others who are frustrated with misophonia sensitivities will discover that they're not alone. I also hope that people who may not have misophonia will gain some insight about what it's like to have this condition.

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Meeting up with the UK Misophonia MeetUp group

2/10/2014

1 Comment

 
Blimey, mates. I can't believe I'm actually here in London! Somebody pinch me!!!

For those of you who saw my Tweets (yes, this website does have a Twitter feed at @SenseHaven), my optimistic predictions of having a "trigger-free" experience in business class for the last leg of my flight here was short lived. Of course, my seat was directly in front of a half dozen obnoxious sorority girls. (They must've been alums, because they were too old to be still in college.) The girl behind me was talking extremely loudly to the girl sitting diagonally behind her. I couldn't imagine that their carrying on wasn't annoying to other people besides me. Unfortunately, the Midwest spoiled me with people's kindness and understanding about my misophonia (or my judgment was impared from lack of sleep) because before the plane took off, I asked the girl behind me if they were planning to talk so loudly throughout the trip. (Big mistake!) I explained that I have a condition that makes me sensitive to sound and even with my earplugs in, they were being very loud. Although I asked her calmly and politely, the girl behind me was rude and dismissive. Besides telling me to wear headphones, she offered me a Xanax. (If this were the 80's, I'd say she was telling me to take a "chill pill.") So much for people being understanding if the message is delivered politely...

I pretty much ignored them during the 5+ hour flight. My headphones are really good, so between blasting my music during take-off and watching movies until touchdown, I didn't hear them at all. (I probably should've kept my mouth shut and waited to see what happened, but I figured it was easier to approach them before the plane took off than during the flight. Oh well... Live and learn.) I'd say that the situation resolved itself but no such luck. When the plane landed and people were debarking, I decided to take my time gathering my stuff. (We landed an hour early, so I was in no rush.) Of course, the sorority sextet had a similar idea, or they were deliberately hanging back to be obnoxious. Why do I say that? Because no
sooner do I stand up to get my carry-on out of the overhead compartment when I hear a "Shhhhhh" sound behind me. It was the girl two rows behind me. I looked at her and said, "Really?!?" to which she looked at me and replied, "What?" with her sorority sisters giggling around her. I chose to ignore them, but since they were blocking the aisle between me and the exit, I walked through the center seats  to the far aisle to get around them. As I waited for the guy in front of me to move, the girls kept making "Shhh" sounds at me.  I not only ignored them, I just smiled and joked with the guy in front of me as I helped him unhook the handle of his bag that got caught on one of the armrests. I mean, what was I supposed to do? If I told them off, It would've been like validating them and playing into their game. They would have just escalated their taunts even more. Of course, it wasn't over even when I was off the plane...

I went to the restroom before entering the customs area. Unfortunately, that was enough of a delay to put the sorority beyotches right in front of me. I tried hanging back so that I wouldn't be near them, but they gathered at the other side of the express lane desks where our seating group was supposed to go through and stayed there chatting away. I couldn't imagine why they were standing there but they wouldn't move, even after about 5 minutes. So, since there were no lines at the other stations (the place was empty except for me, the sorority girls, and the customs agents), I decided to go through one of the standard lines to the custom desks at the far end from where they were standing - which luckily wound up being right next to the exit doors. Did I let them get to me? Yeah, probably so; but I wasn't going to give them another opportunity to bully me if I could avoid it. Once beyond the checkpoint though, all was good and I never saw them again.

The train and the Tube (subway) ride to the hotel was pretty uneventful. Once I checked in, I only had about two hours to relax until heading over the the UK Misophonia MeetUp get together. Of course, I made the mistake of lying down for an hour and a half catnap, which wound up being a huge jet-lagged tease to my body. I was wide awake and energized before taking the nap, but waking up from that slumber was nearly impossible. I wasn't going to miss the get-together no matter what; so after hitting snooze a couple of times, I finally dragged myself to the pub. I'm so glad I did!

When I arrived, only the organizer and a couple of other people were there but by the time the get together was in full-swing, I'd say we had about 15 or so people in our crowded little area of the pub. Before meeting up with them, I wondered what it was going to be like to have the gathering in a pub, but it actually wound up being a good thing. The din of people talking around us was like white noise, drowning out potential triggers. (Only once did I notice the sound of someone at the table behind us banging his spoon on a plate but other than that, I wasn't bothered by the environment at all.)

The people in the group were lovely and came from many different backgrounds. One of the researchers from the fMRI study was there too, and piqued the interest of several people who were not aware of the study. Among other things, we talked about coping methods and situations where we struggle with triggers. (I wish I could upload the photos I took of hearing devices that two people shared with the group.) What I found interesting is that the way the healthcare system is set up over here, they are able to get their noise-generating earpieces for free (or at the most, about $10). They couldn't believe that similar devices in the states cost nearly $2,000! It made me wish that I was living in the UK...

We also talked about how to broach the subject of misophonia with employers as well as discussing the public's perception and lack of knowledge about misophonia.  We talked about the need to get the word out as well as exchanging resources for what's already available. All-in-all, it was a great opportunity for us to share our experiences and seek advice from others who are going through the same thing. I found it enlightening that when I mentioned what happened to me on the plane with the sorority girls, the woman sitting next to me said that perhaps if the girl on the plane had been by herself, she might have been more understanding; but since she was with her sorority clique, the peer pressure to be dismissive of my request and instead be obnoxious towards me outweighed any potential politeness. (I'm not verbalizing her explanation as well as what she said at the pub.) I never would have thought about that perspective, but it made sense when she said it. 

This week is sure to be interesting and educational for me. I'll get to know the streets of London quite well because I just found out that the Tube workers will be on strike from Tuesday night to Friday. Figures that my tests for the fMRI study are scheduled for Wednesday and Thursday; so it looks like I'm going to get some good exercise walking to/from the research facilities. (It's only about a 25 minute walk, which isn't too bad. In fact, it'll be a great way to experience the city!)

To be continued...
1 Comment
Bonnie link
2/11/2014 11:14:21 pm

I'm excited to hear that you are finally across the pond. Too bad about your rude plane-mates. I can't wait to hear more. I am hoping for a successful trip and smooth sailing the rest of your journey.

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    About the Author

    Emlyn Altman has been suffering with misophonia for over 40 years, even though she only found out about the actual medical condition much more recently. As frustrating as the condition has been over the years, her heightened sensitivities across all the senses considerably influenced her talents within the visual fine arts (particularly sculpture), music (singing, piano, and many other instruments), writing, and culinary backgrounds, as well as professional achievements as an architectural lighting designer. Her goal in developing this website is to promote more awareness about misophonia and help other sufferers as well.


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