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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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A busy week of Misophonia updates

9/15/2013

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So, as predicted in my previous post, I worried for (almost) nothing. I was able to wake up early and left at 5:45 a.m., so I made it to the university with plenty of time to set-up, make a few tweaks to my presentation, and spend a little time talking with the professor about her classes and lighting education in general. It wound up being a very busy day of back-to-back lecturing and one-on-one desk critiques. By the time I gave my last critique, my throat was really sore, but I was so excited by all the creative designs I saw being developed by the students.

Each class had about twenty students, most of them women. Although I was worried that there'd be a lot of gum chewers in the small classroom, I only noticed one student (the only male in the first class) chewing gum before I began my first presentation. I was a little nervous when I saw that, but he never cracked his gum during class and once the lights were turned off for my PowerPoint presentation, I didn't notice him chewing at all. There were a couple of students who I'd see twirling their hair from the corner of my eye, but during those times, I either turned to look at the slide projected on the screen or I turned my gaze to make eye contact with students in the other half of the room. All-in-all, it worked out really well. I hope to be able to go back in a couple of weeks to see their final designs constructed.

I did have a little snag when I got back to the office the next day though. One of the principals emailed me while I was at the university to say that my annual marketing report meeting to the principals for my discipline had to move from our scheduled time this past Friday to another day. (Unfortunately, my cell phone ran out of battery and I couldn't try to charge it until I got to my car charger on the way home). He sent a follow-up email telling me off for blocking out the entire month of October in my Outlook calendar,
which I only did as a "Tentative" event when I was told a couple of months ago that I might be able to participate in the misophonia fMRI study. When I replied to the principal, I explained that I might have to go out of the country in October but I didn't have a specific date scheduled. I added that I'm happy to work with them for whatever needs to be done work-wise but my health comes first; and in the future if he had any questions about my schedule, he should just ask me or my assistant first before making any rash assumptions. He didn't respond to that...

I was so angry and frustrated by his email because he doesn't care what else I may be involved in - whether it's project related or not - what he wants is all that matters. His projects take up the most of my time and effort and as a result, all of my other projects wind up having to take second priority to his. (If only the other principals knew that their projects were always being put behind his, which I plan to reveal when I finally do have my rescheduled marketing meeting with them.) I could have events and meetings scheduled for a several months in advance, but if he wants something, I have to drop everything to appease him. The fact that he couldn't even bother asking me why I blocked out a large period on my calendar as "TENTATIVE"  (which is indicated by a diagonal pattern of lines on the dates, instead of a solid colored fill), but could tell me off with other people cc'd on the email based on his own assumptions, just made me feel that he's oblivious to anything that falls outside the realm of his "kingdom" (meaning, his projects). I was actually surprised that he didn't respond to my comment about asking me if he has any questions about my schedule, since he usually has an answer for everything.

On a happier note though, Friday morning I did have a very pleasant Skype conversation with the researcher for the fMRI study. (Gotta love Skype!!!!!)  He explained to me his schedule for having to present his research proposal to various committees for approval; but if everything goes well and they give him the "green light" to proceed with the study, I should be able to be a participant. If that does happen, he'd probably have me come over towards the end of the testing period, just so that they can first make sure the testing process is perfected (my word, not his). I'm just happy to know that I still am being considered as a potential candidate. 

Although we didn't use the video feature of Skype (so he wasn't able to see my facial expressions), I'm glad that he was able to hear my voice when I reiterated how much it means to me to be included in the study because I wanted to be able to help researchers better understand misophonia however I can. The better we understand misophonia, the more likely a cure - or even a concensus for how to treat it - can be found.

Hopefully, his presentations to the review committees will go well. I know I'll be thinking positive thoughts for him over these next couple of weeks.
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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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