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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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Getting ready for writers' conference

10/8/2016

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Holy cow! Has it really been a month since my last post?!? Time is flying so much faster than I realized... (Granted, a couple of weeks ago I went on a business trip and wound up working over 94 HOURS in one week trying to tie up loose ends before leaving on the trip, not to mention the long hours during the site visit too...)

Anyway, I'm very excited that in less than three weeks I'll be going to a writers' conference to hopefully help get my butt in gear and wrap up my misophonia memoir. So much has happened in my life since I first embarked on writing the memoir and I've got my fingers crossed that the conference and master class writing retreat will get my creative juices flowing. It's also the first time I've taken a personal "vacation" in close to four years, so this trip is long overdue!

Misophonia-wise, things haven't been as bad as prior years (mainly since I've been fortunate enough to have the whole office to myself over these past few months). We did hire a new person who will be starting in a week, but she seems really nice so I'm thinking that she might be quite understanding if I do need to address any triggers with her.

Last week I met up with some other misophonia sufferers for the first time in quite a while. It was nice to have that kind of support again, although I was a bit distracted/triggered when a woman sat down at an adjacent table and started to breastfeed. It wasn't the breastfeeding itself that bothered me (she kept the baby covered under a blanket) but it was the rocking and burping and other repetetive motions/verbal sounds that kept triggering me. It was tough because I couldn't look at one of the people in my meeting without seeing these triggers just beyond him. I tried covering my eye with my hand and hair to block the distraction (which the mother probably thought that I was offended by what she was doing - which I wasn't). What was worse was another woman (perhaps the grandmother) sat down and started bouncing and burping the baby too. The triggers were so frustrating, but I did my best to cope.

It's funny... This was one situation where I decided not to address the source of my triggers. I've had other sufferers amazed when I say that sometimes I will approach a stranger if it's really bothering me. (Most of the other sufferers I've met say they'd never ask a stranger to stop). I always clarify that whether I ask a person to stop or not depends on the situation. In the case of the nursing mother, I knew that it was not the right situation to request her sympathy with my discomfort. Unfortunately, it was not an opportunity where I could "flee" either, so I just had to deal with it the best I could...
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Labor Day update

9/5/2016

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Time has been flying so fast lately. I still can't believe we're already in September!

Not too much out of the ordinary has been going on with my misophonia. For the most part, I've been enjoying the peace and quiet of being alone in the office, which has allowed me to keep focused on the many project "fires" that have been pulling me in all directions. I still experience the occasional trigger at the supermarket by someone whistling, but I've come to accept that as a part of life.

A new extracurricular endeavor that I've embarked upon may be exposing me to more triggers again. I've joined an acapella choral group - which has been a lot of fun but, as with any musically creative groups, it often means a lot of fidgety creative people who either whistle or tap their hands/feet/props - especially during down time when we're not singing. This will certainly be an interesting experience.

The strangest thing for me with this group is that I can't understand how so many of the singers chew gum EVEN WHILE SINGING in the rehearsal. I've already given my section leader a "heads up" about my misophonia in case I feel the need to put my fingers in my ears or walk out of the room entirely (although I didn't go into too much detail). I'm just praying I won't have to stand anywhere near, or in eyeshot, of any gum chewers. (Ugh!)
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New links to interviews about "Quiet Please" movie

8/27/2016

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The funny thing about having an office to one's self (versus working in a large firm) is that my exposure to misophonia triggers has drastically decreased. Other than the triggers I get when meeting with clients or sales reps, usually I'm in a quiet office with a wonderful view of the water for visual breaks. I guess that might be one of the reasons why I haven't been posting as much lately.

That's not to say that I am completely trigger-free. (If only that were the case). No, lately the majority of my triggers are at those client/sales rep meetings, at home whenever TV commercials come on (that goodness for the mute button and FF button!), or while doing errands in public. (Usually that last one is when a store employee is whistling while (s)he works. Damn that Disney song. LOL!)

I do have some new links to share about the "Quiet Please" documentary movie about misophonia. The film's creator has been interviewed many times since the premiere - including an article in the Huffington Post!
  • Huffington Post: http://www.huffingtonpost.com/chester-goad-edd-/quiet-please-filmmaker-je_b_10497022.html
  • SEV Network: http://sevnetwork.com/quiet-please/
  • Motherboard: http://motherboard.vice.com/read/theres-a-new-film-about-misophonia-where-people-are-enraged-by-certain-sounds
  • Observer: http://observer.com/2016/06/if-you-suffer-from-misophonia-everyday-life-can-become-unbearable/
  •  Stat: https://www.statnews.com/2016/06/17/misophonia-noise-rage/
  • Sixx Sense: http://sixxsense.iheart.com/onair/sixx-sense-54580/audio-deeper-with-jeffrey-gould-15005827/
  •  One Part Plant One Part Podcast: http://jessicamurnane.com/misophonia-documentary/ 
  • WOBM Interview: http://wobm.com/living-with-misophonia-and-how-many-people-it-affects/?trackback=blogroll_widget-latest-news
  • https://ida.nonprofitcms.org/a/organizations/main/submissions/details/21399

Hopefully this documentary will help promote more mainstream awareness about misophonia.  :-)
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Misophonia as an Employee vs as an Employer

8/7/2016

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Okay, I'll admit that since this website launched in 2012, this is the longest I've ever gone between blog posts. It's not that I haven't had misophonia happenings in all that time, I'm just finally getting a handle on all the responsibilities of my (not so) new position. Probably helped that it's been almost three months since  the PITA employee left (although I'm still having to deal with the chaos she created on the project on which she had been working), but also what helped was having a wonderful summer intern that, despite being 10 years the PITA's junior, she performed infinitely better! Friday was the summer intern's last day before heading to a semester abroad in Spain, but even she said she's looking forward to coming back to work for us over January-term and next summer too. It's amazing how having a wonderful employee can make the office experience so much more enjoyable and productive.

But enough of talk about employees... Yesterday my thoughts went to how different my misophonia experiences are now as a managing partner of an office versus years past when I was just another employee cog in a much larger corporate machine. It's not that my triggers have lessened (although perhaps being in a smaller office means that there are fewer people in my regular office environment surroundings who might create triggers). No, it's more that the situations where I am exposed to triggers puts me in situations where I'm less able to address them because of my position.

What do I mean by that? Well, as an employee surrounded by dozens of coworkers in cubicles, I found that if there was someone in an adjacent cubicle who regularly created triggers (such as whistling), usually I would be able to go up to that person and politely explain my misophonia and ask that person if (s)he could be so kind as to not create that trigger. If the situation became so bad that I was being triggered by multiple people around me, I was fortunate that the last two companies where I worked allowed me to move to another cubicle location - which usually helped.

In my current position when, at most, there are only two other people in the office (one of whom has a private office), the majority of my triggers occur outside of the office - when meeting with clients at their office or at a job site. It's a delicate situation to be sitting at a conference table with multiple clients who are clicking their pens or drumming their fingers on the table yet despite the torture, you can't afford to offend them. (It's even worse when it's a lunch meeting and everyone is eating crunchy potato chips out of crinkly bags). That's a more challenging situation than having to deal with triggers caused by fellow employees and more often than not I try to sit through the agony quietly - like I did for the many years before learning about misophonia. It's rare now that I reach for my earplugs, for fear that I'll miss something important during the meeting.  No... With my current leadership position, I've found that I've had to go back to "toughing it out" over speaking my mind.

Of course I'm still fairly open about addressing my discomfort in public when I'm exposed to triggers, but when it comes to triggers caused by clients... I'm still at the point where, unless they know me very well, I hold my tongue and hope that that it winds up being an efficient meeting instead of a long, drawn out one.
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Gotta love modern technology...

6/25/2016

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For those of you who know me well, I'm a self-professed geek. I still have my Atari 2600 (not plugged in, but I still have it), I love playing with gadgets and new technology toys, and love sci-fi movies/shows. Despite my geekiness, I'll admit that I am behind the general populace when it comes to social media and technology glitches/frustrations, like the ones I've had over the past week, make me want to "gravity test" my computer or the offending electronic device.

For instance, I just spent the past hour trying to figure out why the "poll" feature that I've had on this website since the day I launched it in 2012 wasn't working the way I wanted it. When I created these polls, it was with the idea that ANYONE who submits an answer could see the result of the poll. For whatever reason, whether it was this website's host updating their system or the poll host changing theirs, the results of last week's poll was only viewable by me. I tried looking up the answer in the web host's "Knowledge Area," but it only showed me how to create the poll their new way - which wasn't working the way I wanted. I went to PollDaddy (the host that USED to be directly linked to the website's host) and found out that I now have to copy/paste the code directly into my webpage code for it to work. I can't see the result while in editing mode but thank goodness it shows up on the actual webpage. So if you answered the current poll question before today, please resubmit your answer.

Other techie glitches this week included my car's dashboard being in constant reboot mode due to one of the preinstalled applications automatically downloading a code upgrade with glitches. (I was one of hundreds who went back to the dealer on this one). I couldn't use the map... Couldn't use the radio... Couldn't use my phone bluetooth... Very annoying!

Misophonia-wise... I was happy to have the last couple of days to myself in my office. The young intern, who I like a lot, is traveling until Wednesday. Very nice to have a break from her opening crinkly bags and crunching crisp vegetables/fruits during the day. Also, yesterday I met with two of my clients in a small conference room where I sat in-between the two of them. Of course they both were clicking their pens, tapping their fingernails on the table, and other misophonia triggers to which I couldn't respond. That was the longest 2-1/2 hours I've had to endure in a LONG time! 

Looking forward to a bit of quiet recoup time to myself today.  :-)
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Misophonia in my sleep?!?

6/18/2016

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This is what happens when I don't go to my weekly writing MeetUp group meetings... Another long gap between blog post updates. Sheesh. My bad...

Can't say that it wasn't justified though. Now that my previous coworker is no longer with the firm and we have a new summer intern who has been so lovely and productive, I'm finally whipping our office back into shape. It's not 100% trigger-free at the office (the intern likes eating healthy, albeit crunchy, foods or things in crinkly packages throughout the day) but at least she seems to be more compassionate about my condition - occassionally even asking if something she does triggers me. She'll only be working with us until the first week of August but just in the three weeks she's been with us, it's been an infinitely better work situation than before.

I do have some interesting misophonia tidbits that have occurred over the past couple of weeks. One big one is that on two separate occassions I actually dreamt about triggers - and even remember trying to flee from them. That's a new one for me on two accounts: One - that I even remembered my dreams, and Two - that I actually dreamt about being triggered. That's going to be a new poll question on the homepage of this website. It will be interesting to see how many other people dreamt about misophonia or triggers. 

Another big thing is happening tonight: The premiere of the "Quiet Please" documetary about misophonia. As much as I had hoped to attend the premiere event, it just wasn't in the cards for me. I wish the Jeffry Gould all the best and look forward to seeing it if he submits it for film festivals out here on the west coast. If you'd like to see a trailer for the movie, click on this link. The documentary has already been getting noticed in the press: https://www.statnews.com/2016/06/17/misophonia-noise-rage/ 

Other thank that, I've had the usual trigger incidents in public places (fidgiting, eating sounds, mothers kissing their babies to soothe them). The worst however was one horrific experience when a woman customer representative started whistling on the phone while I was using my Bluetooth earbuds for hands-free talking. Never have I ever had whistling pierce my ear canal that badly mainly because it was the shortest distance between the source of the trigger sound and my ear. It was shocking and hurt so much, I actually ripped the earbuds out of my ears as I snapped, "Please don't whistle!" It took me a while for my heart to stop racing after it happened. All I can say is, "Yikes!"
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One trigger source gone...

5/30/2016

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This past week was an unusual one... In a good way! Last Monday was the final day for the junior person in my office - a big source of my misophonia triggers. The rest of the week felt a bit strange... I can't say why, since I've been alone in the office before when she took a week off here and there for vacation. It was just so heavenly to not have to cope with her eating triggers or scramble to put on my earbuds to mask some of the other triggers she created. Maybe internally I was experiencing a sense of renewed peacefulness knowing she won't be coming back.

The past week was less stressful in not having to deal with her additude when she couldn't comprehend why I wore my earbuds. Never mind the fact that I only put them on when she would trigger my misophonia, but not once did I ever ask her to stop. My reasoning is that she had just as much of a right to eat at her desk or do the other things that would create trigger sounds, so I would cope as best as I could without asking her to change. It's a shame she never truly understood the compromises I made so as not to impose on her work environment. I never once requested that she alter her actions to stop making trigger sounds. Yet she had no qualms telling me off when my wearing earbuds meant she had to get off her butt and walk the 10' to my desk instead of being able to speak to me from across the room.

I can't say the week was completely trigger-free though. Typically I like to keep the interior door to the office open, which usually isn't an issue since the only other unit on the floor is a person's condo. This past week though the condo was having renovation work done so they kept their door open and often the contractors would be in the hall whistling. (Man... Between creative people fidgeting and contractors always whistling on job sites, sometimes I feel like I chose the wrong profession for my condition.) Oh well. I don't think I'll ever be in a trigger-free environment. I'll always have to deal with triggers as best as I can with whatever the situation presents.

My time alone at the office will be short lived though... A new summer intern is starting tomorrow and she seems very sweet. It will be interesting to see if the trigger-free office will remain that way.

Wishing you all a memorious Memorial Day.
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Anyone have a time machine?

5/21/2016

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Wow! Has it really been nearly three weeks since I last posted an update? Where has the time been flying?

So much has happened since I last posted: revelations, new developments, and SSDD stuff. The first week of May I was in Vegas for a hospitality design conference. It was great to meet up with old friends/colleagues and be back in a desert environment again. It revealed that my coughing issues that had been tormenting me since Christmas was a direct result of my tree/grass pollen allergies here in the PNW. (Even more of a reason why my goal for the upcoming year is to connect with new clients down south so I can move back to Vegas and start up an office location there).

Trigger-wise during the conference, I experienced the SSDD triggers that I normally do whenever I travel or am immersed in crowded events: whistlers, fidgeting anxious people at the airports, eating noises... I just do the best I can with mitigating my exposure to the triggers or wear my earplugs most of the day so people don't have to see me inserting them into my ears. One evening I got to a restaurant before a friend and when the host tried sitting me at the end of the bar right in front of the bathroom doors and directly underneath a speaker, I was proactive and asked him to be seated elsewhere. He put us at the other end of the bar - right where the servers went in and out of the kitchen - but I still felt it was better than the distraction of people bumping into me trying to go in and out of the bathroom.

A little over a week ago I went to a new misophonia meetup group that started near me. It was fairly small (only three of us) but that's understandable being that it was the very first meeting. I've only been to one other meetup before (the UK Misophonia Meetup group)  which seemed to be a more casual meeting, but I liked the fact that the organizer of this new group put a lot of thought into the meeting structure. It was nice to hear everyone's experiences with misophonia as well as to be able to share mine with people who truly understood what I experience on a daily basis.

The most exciting misophonia happening for me though was the resignation of the junior designer in my office. Even though she knew about my misophonia, many times she would say to me, "I don't understand why you have to wear earplugs or listen to your music so loud." Let's just say I won't be missing her frequent eating noises every couple of hours (potato chip bags, scraping yogurt cups, dropping handfuls of nuts onto her desk, eating crunchy apples, clinking her silverware on the china bowls when she ate her oatmeal in the morning... etc.) There will only be about a week of having the office to myself until our summer intern starts, but I'm looking forward to savoring the quiet environment during the time I have.

One other goal I have this weekend is to make my travel plans to go back to NYC for Father's Day weekend so I can see the opening screening of Jeffrey Scott Gould's misophonia documentary called "Quiet Please." 
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Brief blog update...

5/1/2016

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I'm long overdue for a blog update and as much as I want to write a lot here to make up for that (including all the wild misophonia triggers I had to deal with during a conference trip this past week) but in all honesty... This is going to be a short entry (mainly because it's a Sunday, and my birthday, and I spent over eight hours of the day at work of all places). I just want to go home and enjoy what few hours are left in my birthday.

I will just briefly note that in the past week+ that I haven't written in this blog, I have been amazed by the number of customer representatives (nurses, sales representatives, hospitality staff, etc.)  I've had to deal with who chew gum while working with customers. It baffles my mind. Putting aside my misophonia discomforts with the sound of gum chewing, it's not very professional to me.

​Just saying... 
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Good People!

4/9/2016

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I had to make that the title of this post because that's the comment my MeetUp friend said after a misophonia interaction that just occurred...

I've been working on my writing at our regular meeting place way before the meeting was scheduled to start and had an interesting experience right after the group leader arrived. He was just settling into our table when someone waiting in line across the room started whistling VERY loudly. (One of my biggest triggers.) I debated about whether or not I should ask the person to stop but finally went over to the man. I sheepishly said to him, "Can I ask you to not whistle? I have a medical condition and it really hurts my ears."  He gave me a funny look but then said okay, and stopped. What surprised me was that he then said to me, "Thank you for asking," to which I replied, "Thank you for being so understanding." That's when the  leader of my group, who knows about my misophonia, looked at me and said, "Good people!"  That was a first for me! Not so much that he was willing to stop, but that he actually thanked me for asking him to do so.

What's funny is that after the man left, my friend looked at me and said he now had an earworm that's giving him the urge to whistle "The Lion Sleeps Tonight," since that's what the man was whistling. He was struggling because he wanted to whistle the song but knew that doing so would be very painful for me. What's weird is normally I like that song (when it's sung) but didn't even realize that's what the guy was whistling. I only heard the whistling sound and immediately felt my trigger response kick in. It didn't even hit me WHAT the song was, only that the whistling was torture to me.

Every now and then I'm pleasantly surprised at how compassionate some people in this world can be!
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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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