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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.

Please feel free to post any comments or use the "Contact Us" page if you have any questions/comments you don't want to post online.

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Baffling Triggerer actions...

4/25/2014

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As per my previous post, last night I did take my neighbor to her grandson's high school Jazz band concert. In general, it was enjoyable. I always love hearing live music and it's amazing to see how talented the kids were. (They ranged from 7th grade all the way up to seniors and the solo riffs were impressive.)

What baffled me is that, while we were eating pizza and waiting for the concert to begin, I noticed a high school girl across from me at the adjacent table bouncing her foot. She bounced it non-stop for almost a half hour before the concert began **BUT** as soon as the concert started, her foot was completely still! She didn't even bounce it to the rhythm of the music. WEIRD!!!  I took videos of both scenarios below but if you have misophonia, please don't play the first one. I don't want to stress out anyone. I just found it strange how she stopped bouncing her foot after the music started. It seemed so backwards to me. (Not sure what made me videotape her bouncing foot in the first place but, given the second video, I'm glad I did.) I'm only posting the videos for non-sufferers to see one of the simply innocuous movements that can annoy sufferers. Don't feel obligated to watch either video.

On another note... I should also mention that the author of "Sound Rage," Judith Krauthamer, just posted information about a twenty-page statistical analysis report derived from an online survey of over 470 misophonia sufferers. (A summary of the report is at the bottom of the home page.) The demographic findings address types and prevalence of triggers, reactions, gender, age, and even responses to triggers, as well as other datasets. For more information, and to request a PDF of the Descriptive Statistics report, go to the Contact page on the "Sound Rage" website.

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No good deed goes unpunished...

4/24/2014

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Right now, I'm sitting here in the waiting room of an eye clinic helping out my elderly neighbor. I met her and her husband during my apartment complex's holiday party when I first moved to the Midwest two and a half years ago. They lived in the apartment directly below mine. Very sweet couple and I'll never forget how after I met them, the wife brought me cookies a couple of days later. In all the years I've lived in apartment buildings as an adult, I never got to know my neighbors. My work schedule was so demanding that it was rare that I saw any neighbors in the hallway and when I did, there was little interaction with them. So when I met the couple that lived below me, not knowing a soul here in the Midwest, it was a friendly reminder of how people were very different than what I experienced with my neighbors out east.

Well, I found out earlier this week that my neighbor's husband passed away last week. She is a very sweet woman, so when she mentioned about having to go to the eye doctor to get treated for her macular degeneration, I offered to drive her. (Not like I've got much going on while unemployed other than my writing and looking for jobs.) I've had my own experiences having to go to the retinologist and driving home with my eyes dilated; so I wanted to help. I brought my laptop thinking I'd do some writing while she was being treated; but unlike when I'd go to the retinologist and they'd leave me in the dark examining room while my eyes were dilating, after each step, she'd come back outside to the main (bright) waiting room. That's when my misophonia kicked in...

It would have been one thing for me to be able to sit and work on the computer while wearing my earbuds, thereby allowing me to focus on the computer screen without having to see or hear anything around me, but since my neighbor kept coming back to the waiting room, I wound up having a conversation with her with other patients constantly in my field of view (either directly across from me as I looked past her or in my side peripheral vision). I tried so hard to focus on what she was telling me about her family and friends but too many of the other people around me were fidgeting BIG TIME. (I guess that's to be expected when people are anxiously waiting to see the doctor.) First the person directly across from me was bouncing her foot so at one point while my neighbor was talking, I told her that I was still listening but got up and put my leather jacket on the armrest of the chair in-between me and the foot twitcher to block my view of her feet. Problem solved, or so I thought...

A few minutes after I put my jacket on the chair, an elderly man sat directly across from us and stretched out both of his legs in the middle of the aisle. He then proceeded to rock both of his feet in and out... In and out... Like two pendulums in a mirrored sync. It *really* triggered my misophonia so badly that I did something that I've never done before... I actually put my work "messenger bag" on my lap and opened the flap to block my view of the guy's legs. I'm not kidding. I must've looked ridiculous! There was no way that I could block the visual with my hair because his feet were practically under my nose. Then another guy sat just left of the chair where I put my jacket and started twitching his feet too. Even closing one eye didn't help, and as much as I tried so hard to pay attention to what my neighbor was saying, my annoyance to the triggers that were slowly beginning to surround me was really making the rage begin to change from a slight ember to an ever growing fire... I kept shifting my position to try to block all three people with the flap that I was holding open and still while listening to my neighbor. I'm ashamed to admit that I probably didn't hear half of the stories she was telling me because I was trying so hard to block the triggers. (Hopefully, I won't be quizzed on what she said when I take her to her grandson's high school jazz concert tonight. Who knows what updates I might be posting after that experience. I don't even remember the last time I attended a high school event. I'm less worried about trigger sounds - since I'm sure it will be a loud concert - than I am about visual ones.)

Anyway... I finally thought I had positioned myself in the waiting room in such a way that I was able to block the visual triggers when out of nowhere, I started to hear the sound of someone drumming their fingernails against a hard countertop. Just as I made a slight groan under my breath (which my neighbor heard), the nurse called her for her treatment. As soon as she got up, I quickly pulled out my laptop and plugged in my earbuds to drown out the tapping with my music. Another gentleman who had been sitting diagonally across from me (but sort of behind me when I was talking to my neighbor) must have lost his seat when he got up from his chair, so he took my neighbor's seat, which I didn't want to make a big deal about except for the fact that he immediately started bouncing both legs as soon as he sat down. I politely asked if he could stop bouncing his legs, which he did... for about two seconds before starting up again. I pulled my hair over to try and block the view of his legs and started writing this blog update.

I could feel my heart racing and was relieved when my neighbor came out about five minutes later to say that she was done. I couldn't wait to get out of there! I have to remember to be more careful around doctors' offices, especially knowing how anxious patients get while waiting to see their doctor. As stressful as the whole experience was, I'll admit that it did give me an interesting idea for a potential coping tool... Don't know how feasible a solution it could be, so I'll hold off writing about it here until I do a little more research first. (I'm not trying to be a tease... I just want to hash the idea out a bit before talking about it.)


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Have you ever seen a bird yawn?

4/22/2014

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Here I am sitting in a coffee shop again, feeling the warm sunshine and looking out the window to a clear blue sky... Not a cloud to be seen... I'm confident that we've finally seen the last of the snow (at least for six months or so...)

My cockatiel ("Tooki") was unusually whiny this morning (one of my worst triggers at home when he does it), so it hit me that I'm LONG overdue for posting an update here. I seriously think that my being unemployed has seriously spoiled him - much more than usual. It occurred
to me that I've become his "security blanket" (or living "security tree"). When I came back from my morning workout, he was extremely nudgy and whiny. I have a little perch for him at my bathroom sink so he can see me as I'm doing my hair and putting on make-up. (He screeches whenever he knows I'm in the apartment but can't see me.) So as I was getting ready, he kept whining and pacing back and forth on the perch with his wings spreading like whenever he was about to jump onto my shoulder. It's really a no-win misophonia situation for me... If I leave him on the perch, he whines non-stop every few seconds. If I put him back in the cage, then he screeches at me. If I put him on my shoulder, then I not only reinforce his behavior, I also can't get myself ready. I love the little guy but I better figure out my employment situation quickly so I can get back to a "normal" routine again and hopefully, wean him away from his clinginess. (BTW, above is my first attempt at uploading a video for this blog. It's a really cute video of a back-and-forth yawning thing he and I do when he's in a certain mood. He'll yawn, then I'll yawn, then he'll yawn... And so on until he decides to walk back to my cheek. There's a little crackling sound from the microphone so you might want to mute your volume if that is one of your triggers. It's a cute video even without sound.)

Other than that... Last week was really a rough one for me. Unfortunately, I didn't even place in the Toastmasters' (TM) Division contest, which was hard on a couple of fronts... I felt that I really knocked it out of the park, even more so than the earlier contests, but the loss had its ambiguities. Before they announced the winners, they said that someone submitted a protest to the judges. I have no clue if it

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Winning speeches about Misophonia

4/11/2014

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As I mentioned in my last blog post, I competed in a Toastmasters' area speech contest on Tuesday. Well, I'm happy to let you all know that I won the Area 53 contest and tomorrow I compete in the Division contest. (Woo hoo!!!) The topic of my speech was about how we should embrace change and used the example of my move to the Midwest and how it led to my learning about misophonia. My point was that although major changes can be scary, if we don't take advantage of opportunities that present themselves, despite how terrifying they may be, then we may never discover things that could change our lives in a good way.

I used a quote written by C. Joybell C. that said:

"We can't be afraid of change. You may feel very secure in the pond you're in, but if you never venture out of it, you will never know that there is such a thing as an ocean, a sea..."

Too many people I've known over the years missed out on opportunities because they weren't willing to take advantage of a potential change in their lives. Even when they were unhappy with their current situation, sometimes the urge to remain with what they're accustomed felt safer than delving into the unknown. It takes courage to break away from that secure feeling to try something new. If I hadn't taken a chance by moving somewhere where I had no family or friends (not to mention knew nothing about the state), I never would have been in the position where I encountered the stranger on a plane who introduced me to misophonia. I might still be tortured by triggers thinking I was crazy and not knowing that there was actually a medical reason for my suffering.

We'll see what happens tomorrow. If I win the next round, I get to move onto the District contest next month. If not, at least I'll know that I was able to introduce the term "misophonia" to a few more people. Perhaps when my competing time ends, I'll post the write-up of the entire speech for everyone to see.

I will add that the contest situation was affected by my misophonia. When I first arrived at the room, I put my belongings at the back row of the seating setup to be near some of my other club members. As the start of the contest approached, I discovered that all of the seats in the back row were for the judges. The other contestants and guests had already took over the ends of the rows, so the only seats available were right in the center of the first row. I begrudgingly moved to one of those seats but as soon as I sat down, the woman next to me pulled out a rustling bag of crunchy snacks. Luckily, the contest hadn't started yet, but I started to become very anxious. There were no other seats available and I knew that bag of snack food was going to stress me out big time! So, I gathered my belongings and went to the back of the room where there were a few tables set up. The Division Governor was sitting in that area and although I don't think she was too happy that I wasn't sitting with everyone else, not to mention that these tables were behind the judges area, I explained that I have a sound sensitivity issue and said if she'd be okay with it, I'd really prefer to sit in the back. I was very happy that she allowed me to do so. It was a much better location than if I had remained next to the bag rustler.

I did learn from that experience though. Tomorrow I'll make an effort to get to the contest early so I can have more options when choosing where I ultimately sit during the event.

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Busy beginning of April

4/5/2014

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Today I went to a nutrition class held by the fitness program that I joined last summer and am finally getting back into the swing of things this week. My back was bothering me a bit this morning, so rather than sitting on the mats with the huge group of other people attending the training, I sat on a chair just outside the workout area. Since they gave us several handouts, I was able to block some of the visual triggers I experienced from the people sitting in front of me who were fanning themselves with the handouts or shaking their feet/legs (I don't know if it was from boredom or just being uncomfortable sitting on the floor so long).

Halfway into the class though, a man comes in with two little girls (maybe around 6 years old). I tried to focus on the instructor but  in-between me and the workout space was three bins of rubber medicine balls of various weights. Of course, the girls grabbed one of the balls, which wouldn't have been a big deal except they decided to play a game of catch right in front of me. The man, who I assume was their father, was standing right next to me so I asked him if they could play with the ball by the reception desk instead of right in front of me, because they were very distracting. He was nice enough to ask them to move, but I'm sure he probably thought my request was weird.  What can I say? They were throwing the ball practically at my eye level right in front of me. I bet that even someone without misophonia would have been distracted with a game of catch being played right in front of their face.

This coming Tuesday, I will compete at the next level with my speech where I briefly talk about misophonia. We'll see what happens. I still need to cut it down a bit. The speech has to be between 5-7 minutes and if I go above 7 minutes 30 seconds, I'll get disqualified. It's been too close to 7 min 30 sec for my comfort.

On another note... I'd like to share a link to a new book that just came out by Wendy Aron. She's the author to whom I've referred a couple of times who has a regular misophonia column on the Psychology Today website. This book takes a humorous look at healthcare insurance and is called, "How a 52-Year-Old Neurotic Survived 24 Hours Without Health Insurance (and You Can Too)" Given how frantic people were last week trying to sign up at the last minute for Obama Care, this short Kindle publication is very timely. (I got quite a kick out of reading it too, especially since I'm on COBRA right now.)

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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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