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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.

Contact ME

Thanksgiving evokes another deep thought

11/30/2014

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Happy (belated) Thanksgiving everyone. If many of you sufferers are like me, Thanksgiving is a tough time of food and travel triggers, many of which I've spoken about in previous posts. Today I'd like to share an interesting "deep thought" that was inspired by my relaxing over a manicure over the holiday.

The manicurist knows that I am sensitive to sound, and usually wear my earbuds to listen to loud music so I don't have to listen to the customers in adjacent spaces having their nails filed or callouses buffed off. Although the buffing of my feet can be somewhat ticklish at times, this time when she was filing my nails it struck me how I wasn't bothered by the rasping sound. It then occurred to me that maybe what bothered me about hearing other people's nails being filed wasn't just the sound of the filing, but the fact that I wasn't FEELING the filing at the same time as the sound. Perhaps part of my annoyance of sound triggers when other people do them is that since my other senses don't experience the sound too, the body is discomforted by the disconnect between experiencing one sensation but not feeling the corresponding sensations that go with it...

Something for me to ponder as my journey for relief continues...
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Misophonia and keeping active

11/23/2014

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This week has been an interesting one, as it relates to my misophonia. Right now, I'm relaxing in a coffee shop after spending the afternoon at a ceramics studio. When I moved to Vegas, I swore to myself that I wasn't going to fall into the same bad workaholic habits that I've done in the past, so I've really made an effort to pick up "extra-curriculars" that I haven't enjoyed in many, MANY years... Joining a ceramics class/studio was one of them, the other was joining a choral group again.

I've really enjoyed doing ceramics work again, although I'll admit that I'm quite rusty (not having formally  worked with clay since high school). Last Tuesday was a very rough class for me because at one point, a woman sat at the pottery wheel next to mine chewing a huge wad of gum. Now how's this for torture... My hands are covered with wet clay, so I couldn't put my fingers in my ears. At one point, when I was finished throwing a pot, I got up and was having a debate in my head whether I'd even have the courage to ask the woman to not chew gum around me (something I was VERY reluctant to do), or switch to another pottery wheel far from her, or just call it quits for the night altogether

The instructor saw me during this internal debate and said, "You look like you are lost..." That's when I explained to him about my misophonia and how the gum chewing was disturbing to me. If I had my earplugs, then it would be a different story but in one of those rare moments, I didn't have them with me. So I told him I was going to put my earbuds in to try to help me focus on what I was doing. It worked well for a while until the instructor wanted to tell me something. So, I pulled out one earplug even though my hand was covered with clay slop. (Made a nice white streak down my hair like Lily Munster.) Oh well. Just have to remember to have extra ear plugs in my glove compartment for emergencies.

The singing extra-curricular activity has been fun too. Singing in rehearsals again made me realize just how much I enjoyed being in a choral group. What I forgot about was how much it bothered me when people adjacent to me would tap their feet or their fingers to the music. Seeing that again made me remember those triggers from way back when. (That and when some of the guys would whistle during breaks between pieces.) I'm hoping that with more frequent singing, maybe my trigger sensitivity will be reduced to how I was back in my school days. (One can only hope...)

There was something interesting that happened to me at work this week too. During a video conference call with one of our teammates abroad, the person sitting next to me started cracking his knuckles big time. I asked him to stop and although he first snapped back no, he couldn't... (I couldn't tell if he was serious or not), I tried to explain my misophonia but then stopped because I realized it would be too difficult to do so while we were in the middle of the meeting. So, I said I'd explain later... I totally forgot about it until a couple days later when we were both getting coffee in the break room. He asked what I wanted to tell him, so I explained about my discomfort with misophonia triggers. He explained that with his "older" hands, he needs to crack his knuckles, otherwise they start to hurt but he said he'd try not to do so. I said I understood what he felt and didn't want to cause him any discomfort either. I also said I was trying not to talk too much about my misophonia until people really get to know me first and that's when he said something that really touched me... He said, "We're family here. Of course you should let people know when something is bothering you."

After nearly 20 years working at firms where I was in very hostile environments and coworkers would rather stab you in the back to get ahead than work with me as a part of the team... You don't know how long I longed to hear something like that!
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November already?!?

11/10/2014

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I swear, I can't believe how fast time has been flying. I must be having fun! In a couple of days, I will have been in Vegas for nearly three months (and I'm still living in boxes.)     %')

One thing I decided I have to do is to set aside specific days/times to sit down to do blog posts, update reference links (such as the new ones in the scientific research and video pages),  and respond to comments sent to the SenseHaven.com website. I feel badly that I've been doing so sporadically ever since my relocation in August, but I'm going to do my best to get back on track. Just like there are certain evenings during the week when I go to ceramics classes and choral rehearsals, I'm putting SenseHaven formally on my schedule - one evening during the week, and a couple of hours one day over the weekend - to get back into a regular routine here. 

Anyway, despite the chaos of trying to settle in from the move (still), things have been going well for me. I'm still happy at my new job. The people are great and I'm enjoying the projects that I'm designing too. The only thing at work that has been frustrating is my exposure to misophonia triggers. I guess it's par for the course, given that I'm working in another open office situation, but last week I did take a moment to speak with my direct supervisor to let him know about my misophonia.

Essentially, I felt self-conscious having  walked out of a video conference call introduction to one of our teammates in Macau, mainly because two of the younger designers were chomping on Tootsie Pops. (Not licking... Crunching!) I've felt uncomfortable around them at prior meetings in conference rooms, mainly because they are ALWAYS chewing gum, but the sounds of the lollipops clicking against their teeth just sent my triggers threw the roof. It wasn't a formal meeting, just an opportunity to show my face to our colleague abroad before my supervisor proceeded with the rest of his meeting, so I know my supervisor didn't think twice about my politely excusing myself. I've been trying to find the right time to let him know about my condition and after the lollipop triggers, I felt like it was a good time to do so.

It took a couple of days to finally get a good opportunity to talk with my supervisor, but he was very nice about it. I had a feeling he would understand. He's probably been the nicest and most laid back supervisor I've ever had in nearly two decades. Despite his understanding though, I still struggle with my work environment. Unlike my prior firm when I essentially was a department of one, here, I'm a part of a bigger team, so isolating myself from triggers is not something where I see an easy solution. I'm also VERY involved with colleagues from the other disciplines, many of whom frequently come to my desk to collaborate.

One person with whom I coordinate a lot, has a good sense of humor and we both joke when he startles me trying to get my attention when I plug myself into my music to drown out surrounding triggers like whistlers or food bag rustlers. Unfortunately, my misophonia got the better of me at the end of last week when  he stopped by my desk to ask me a question. I started to search for a file on my computer in answer to his question and he just happen to notice an open box with lighting samples on the table behind my desk that was filled with bubble wrap. I snapped, "STOP!" to him when he started popping the bubble wrap, which I know took him by surprise. At first, I don't think he understood why I reacted so harshly, but I explained to him how certain sounds are like nails on a chalkboard to me, and the bubble wrap was EXTREMELY annoying. I wrote misophonia on a piece of paper and gave it to him. He said he'd look it up, but I have no idea if he did or not.

I also had a frustrating trigger experience last week during a 24 hour business trip. As always, air travel is a stressful experience trigger-wise (I won't rehash airport triggers, since I've posted a lot about those.) When I got to my end destination though, I got in a taxi to take me to the conference hotel. It was about a half-hour drive, which wouldn't have been bad, but the driver was chewing one of those soft, sweet gums that I haven't smelled in a LONG time. (Something like Bubbalicious or Hubba Bubba...) The smell was sickly sweet but even worse was the slow motion of his jaw and cheek with every chew. It reminded me of a cow slowly chewing his cud. Although we talked a little bit at first when we pulled away from the airport, after a while, I couldn't even look straight ahead. The gum chewing sounds and motion overwhelmed me - to the point where I put on my earbuds to listen to cell-phone music and stared out the side window. 

It's triggers like that that every now and then make me wish I lived in Singapore - where it's against the (strictly enforced) law to chew gum.
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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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