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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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More Workplace Triggers - Meetings

2/28/2013

2 Comments

 
Business meetings are always tough for me, especially when they are near mealtimes. Meetings that occur first thing in the morning usually has every other person in the room slurping their hot coffee. Lunchtime meetings, especially when box lunches are provided, usually include people crunching on potato chips, crispy apples/carrots/celery... or just the rustling of wrapper bags.

Today I had a meeting that especially hit me hard, which was very unusual since it started at 2 p.m. When I walked in the room, only two people were sitting at the conference table, and I deliberately sat next to the person who didn't have a cup of coffee near them. (Here I thought I was being smart. Little did I know what was about to transpire...)

As other people entered the room, one person sat across the table from me with a container of carrots, broccoli, and celery. I thought I was out of the woods when he finished them all pretty early in the meeting. Boy was I wrong... When that container was empty, he got up and left the room, only to come back with not only a turkey sandwich, but another large container, this time filled with fruit. (Cut up apples, grapes, etc.) Now even though this food wasn't as crunchy as his previous munchies, just the constant motion of him picking up more pieces from the containers to his mouth was kind of distracting too, but that wasn't the worst of it for me...

Sitting to his left was another person who kept opening and closing his pen top - which makes a snapping sound. I tried to politely ask him to stop (which is pretty hard to do in the middle of a meeting especially when the person is across the table from me) but no sooner does he stop that noise, he then proceeded to flick the metal piece on the pen cap that clips the pen into a pocket with his nail. At the same time, the first guy, who had finally stopped eating, started flipping his pen around his thumb. The second guy then stopped playing with his pen (phew!) but then drummed his fingers on the table. All I wanted to do was ask them to stop but there was no way I could do it discretely enough to not interrupt the meeting.

All I wanted to to was get up and walk out of the conference room, but I didn't want to just storm out in a huff either. I could feel my annoyance boil up inside of me and wondered if it was visible in my facial expression. (I tend to wear my heart on my sleeve.) I probably should've put my earplugs in, and looking back... I'm not sure why I didn't.

When the meeting was over, I asked the leader to hang back for a bit afterwards. She was one of the first people in the office who I told about my misophonia (mainly because she was the one to go to when people have questions about our health insurance benefits). She was very sympathetic when I told her how much I was struggling in the meeting, especially when I told her someone was crunching a juicy apple at our previous meeting too. She said there was no reason why I should've suffered there in silence with the internal pain of "needles in arm" like triggers. She then made an interesting suggestion... She said that I should come up with a "trigger phrase" when the discomfort becomes too unbearable at meetings. Perhaps even look down at my cell phone and excuse myself saying "I have an urgent matter to address..." and then walk out. I could then catch up with her later after the meeting to find out what I missed. Considering how much in high demand I am at work, it wouldn't be that far-fetched a situation, although when she made the suggestion, my first thoughts were of some bizarre phrase or "safe" word. I could just imagine getting up in the middle of a meeting to say, "Oh, Kumquat!" before walking out of the room for relief.  (Her "trigger phrase" was definitely more professional and discrete. LOL!)    :-D

It's this type of concern and understanding by my coworkers that makes me feel so lucky to be working at a firm like where I am now. I even made that comment to my coworker and she commented that it's just the way people out here in the Midwest are...

As someone who lived her entire life (up until the past year) on the east coast... I couldn't agree more!
2 Comments

Auditory Stimuli for Coping with Triggers

2/27/2013

9 Comments

 
I received a comment to my 2/17/13 post and felt that my answer would be beneficial to anyone wanting to learn more about misophonia. The question pertained to using auditory stimuli for coping with unwanted triggers... (For the full question, click the comment button on that post.)

Thanks for the question, Sarah. Yes, auditory stimuli are frequently used  to cancel unwanted trigger sounds. I personally love to listen to music through  noise canceling earbuds and it works awesome. (I describe the headphones more fully in my 1/19/13 post.) For me, listening to the music works much better than my earplugs because they completely block out triggers - as well as other distracting sounds. Although my earplugs are quite good, they still allow me to hear conversations and other outside sounds. Listening to music isn't the only type of auditory stimuli that is used to cope with triggers though...

When I was first diagnosed with misophonia, the doctor allowed me to test a  pair of noise generators (I don't remember if they were considered white noise,  pink noise, or brown noise generators...) as a means to help cope with the multitude of triggers that bothered me. The noise generators looked like little hearing aid earpieces with a tiny filament that sticks inside the ear and created a low hissing sound. (They were  similar to what I found on this earplug website, but a lot less clunky.) From what I understand about how they functioned, the hissing creates a sound buffer that covers up the majority, but not all, of triggering sounds. The doctor described the trigger sounds pictorally, like a wave diagram, and the noise generator supposedly creates a higher sound baseline that only allows the tips of the offending sound waves to pass through. (See diagram below.) By doing that, the wearer can still hear normally through but the triggers are not as noticeable above the white noise.
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It was an interesting concept and although I didn't wear the devices long (so I wasn't able to determine if they helped me when exposed to triggers), the "geek" in me could definitely see how it might work.

In the end though, I decided not to get the devices for two reasons: 1) They were pretty expensive (her "discounted rate" was about $900/ear, and the $1,800 to get devices for both ears would not be covered by my insurance. I was not ready for that kind of out-of-pocket hit to my wallet especially when my $5  earplugs - for a pack of 50 pair - were giving me similar results), and 2) Sounds only constitute a fraction of my misophonia triggers. Granted, sounds are the largest component of my triggers, but they are followed very closely by numerous visual triggers and tactile ones as well. I didn't want to spend so much money on devices that only address part of my misophonia triggers. I'd rather use the money towards my search for doctors that are willing to look at my condition medically as a whole and might be able to help me find a more comprehensive treatment/solution.

But that's just me... I'm sure there are other misophonia sufferers who don't have the diversity of senses affected by triggers; and for those people, these noise generating devices may be a great way to function without using earplugs to dull the overall sense of hearing. I think it's up to the individual to find what works best for him/her situation.
9 Comments

Let it snow...

2/26/2013

0 Comments

 
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One thing I've noticed about myself, especially after discovering I had  misophonia, is that I love the moments when there's enough of a calmness that my  senses can take a break. Right now is one of those  moments...

For the past couple of days, I've been getting up super early  (for myself that is) so that I can try to write a couple of memoir pages before  I get immersed in work or other stresses of the day. This morning, it started to  snow (yet again). It wasn't a heavy or hard hitting snow, but in the  darkness before the sun peeked over the horizon, there was a stillness to the crisp air that was mesmorizing. Not a hint of sound from the construction site across the street from my building  nor any hiss of cars driving in slush. Just tiny snowflakes drifing through the street lights amongst the dark,  silent air. It was heavenly!

Even the drive to  the office was not as "intense" as my typical commute (albeit, even my 15-20 minute "typical"  commute nowadays is still infinitely better than the daily hour and a half  parking lot on the beltway back when I lived in DC.) Granted, nothing could top  my commute last Friday when I took advantage of my restless body (which  decided to wake me up at 4 a.m. with no hope of falling back to sleep again.) I wound up leaving for the office at 4:30 in the morning and there wasn't a single  soul in front of me. I've never seen the roads so empty. It's times like those that I miss my day hikes along the Appalachian Trail immersed in Mother Nature... Not an iota of technology for miles that could disturb the tranquility of those walks.

As I sit here at my desk,  where I relocated a month ago, looking  at the snow lightly dusting the street
through the sheer mecho shade covering the window, I am relaxed. Not a trigger to be heard, seen, or felt. There are only a couple of people in the entire office this early in the morning and none of them within earshot. I try to savor these early moments before the day ramps up and performs its raucous symphony of triggering sensations around me.

I am calm...   :-)

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Follow-up to "Memories of the past..." post

2/24/2013

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So, my reconnecting with Don Alhart, the anchorman who thirty years ago did the report on heart attacks that featured my father, made as much of an impact on him as it did me. He even wrote about it on his blog at the TV station.  I was especially flattered when he asked if I minded him posting our reconnection on his blog. I never dreamed that one phone call, which I've thought about doing every now and then over the years but never took that final leap of action, could have such an amazing outcome. I was so honored when he asked and look forward to returning to Rochester this summer (a trip that's long overdue), and hopefully be able to thank him in person.

It's funny how learning about my misophonia - which fueled my drive to promote more awareness about the condition through a memoir - is sending me on this journey of reconnections, not only with memories that I haven't thought about in years (even decades) but with people whom I lost touch long ago. Two days ago, I tried contacting an old friend with whom I worked back in the late 90's. We corresponded a lot, and even met up once or twice after I moved to DC, but somehow around 2000-2001, we lost touch. None of the email addresses I had worked anymore and even though I found her Facebook page, her security settings prevented me from contacting her directly. I took a chance at contacting her through LinkedIn, even though I thought she had left the company listed in her profile, and sure enough... I reconnected with her too!

On another note... Yesterday, I watched a report on CBS This Morning called "Aged Ads" where they talked about how companies are reinterpreting commercials of the past in current advertising campaigns. They showed old ads like Herbal Essences and Grey Poupon and one thing struck me about those commercials... None of them featured one of my worst triggers, "whistling." Yes, there was the occassional trigger of the sound of coffee being poured but as I watched the report, I realized that commercials of the past don't bother me as much as the ones now. (I can names dozens of commercials over the past couple of years that use whistling in their background music. In fact, I'd say that there are more commercials that have whistling than those which don't. I don't remember many past commercials that incorporated whistling. Music and singing, yes, but not whistling.)

I wonder how many advertising companies know that many people (especially those like me with misophonia) fast forward through the commercials not because we don't want to learn about the product but because we can't stand the exaggerated sounds they incorporate into the commercials to help give that "extra-special" sensory experience. I know I'd prefer the more subtle commercials from decades ago...
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Memories of the past resurface...

2/20/2013

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One of the interesting things that is happening with my memoir writings is that every now and then I am reminded of things I haven't thought about in years (even decades). Back in 1981, a local ABC station (WHAM Channel 13 in Rochester, NY) did a three-part series on heart attacks featuring my father, a then recent survivor of a heart attack. I partially remembered the name of the reporter who did the story (I thought it was Don Allen) and, while searching for the Toastmaster's group where my father may have been a member, I was told the correct name for the reporter (Don Alhart, now an anchorman for the same station). I decided to contact Don to see if I did remember him correctly and left a voicemail for him at the staion. The next day he texted me back to say that he indeed was the person who led the story. He even remembered that I played violin back then...

I spoke with Don a couple of days later and was amazed at how much he remembered of me and my family, now thirty years later. When he played some snippets of the report over the phone, I didn't even recognize my father's voice, but just hearing about some of his experiences from his own voice gave me a little more insight into the father that I hardly had the opportunity to get to know.

If it weren't for learning about my misophonia last year, that gave me the inspiration to write a memoir, I don't know if I ever would've embarked on the journey revealing so much of my past - some of which I've forgotten over the years... Some of which I never knew.
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The "stalking" triggerer...

2/17/2013

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Just to preface this post, the title is meant to be funny. (Sometimes it's hard to come up with titles...)

Anyway, I just attended a health screening event. Given my family's history of heart problems, I try to take advantage of these free screenings whenever I can. I'm happy to say that (other than my misophonia), I've got a clean bill of health. Even the arteriosclerosis screening (where they do something similar to an ultrasound to check the plaque buildup in your carotid arteries), I did really well. (Yippee!) I was happy that I always carry around a set of earplugs in my pocket. There was an older woman softly whistling (one of my biggest triggers) and for whatever reason (coincidence or not, since she clearly saw me put my earplugs in...), she kept following me around the exhibit hall floor - while whistling. Weird!!!

I was also reminded of something that happened a couple of days ago. As I was reading some misophonia support group posts, I thought about my first job out of school where my supervisor bought one of those electronic devices for the hearing impaired that would flash a bright light anytime his phone rang. He used it whenever he was at someone else's desk across the open office area to know when someone was calling. (He wasn't hard of hearing at all.) Anyway, I wish I remembered that device sooner because I can't begin to tell you how many times I didn't hear my office phone ring, even though it was only several inches in front of me, because the headphones I used to block my coworkers' triggers worked so well. If I hadn't moved to my current desk location, very much isolated from my coworkers (so my earphones are less of a necessity), I would've definitely bought one. I think it'd be a very handy supplement to noise blocking/cancelling devices when working in an environment where phone usage is a necessity.
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Talking about misophonia...

2/13/2013

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Over the past month or so, it occurred to me that if I really want to be more vocal about promoting better misophonia awareness to the public, I needed to rejoin a group where my membership lapsed several years ago... Toastmasters. Although each individual club has its own unique style, in general when I was a member of Toastmasters, my speaking skills dramatically improved (plus it was such a great way to make new friends.)

Over the past three weeks, I visited three different clubs near my office. I noticed that I made a special effort to sit myself at a location very close to the speakers' lecturn, in the hopes of minimizing any visual/audio triggers I might experience. (This is something I realize I've been doing a lot lately when attending conferences or other events with a lot of people.) The first club I visited, the only triggers I noticed were a couple of nervous actions by newbie speakers (jingling coins in their pockets, fidgiting as they spoke) but in general, the members of that club presented very well. They also had a "treatmaster" who brings yummie goodies to the meeting. That's one concern I might have with the club - especially if the treatmaster of the day winds up bringing something in that's really crunchy.

The second club was a different story. There weren't as many people as in the first club (only about 6-8 compared to about 20-24) but there were more people who were creating visual triggers (bouncing legs, tapping fingers on the table), one of whom sat next to me. I found myself positioning my long hair as a "blinder" or trying to position objects near me to block the view. I wasn't very successful though.

The third club, from which I just returned, was great. I think I only saw one person who brought lunch to the meeting and she was at the other end of the table, so if she had made any noise, I didn't hear it. I didn't notice any nervous fidgiting either. I have a feeling, this may be the club I join. I can't believe that I'm allowing my misophonia to influence my decision about which club to visit but with this condition... I guess I've got to do what's be
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Further reflections about my Mayo Clinic visit...

2/3/2013

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So, this weekend has been filled with reflection and revalations. Many of my thoughts have been inspired from attending the writers' conference a couple of weeks ago, so much so that yesterday morning my body woke me up at 3:30 a.m. and wouldn't let me go back to bed until I jotted down my bleary eyed thoughts that could work well with my book. (So many memories of past events that I hadn't thought about in years.) It reminded me of when I had my regular column in a professional magazine and needed to keep a pad of paper and a pen with an illuminated tip on my nightstand for all the ideas that would pop into my head as I was either falling asleep or just waking up. I knew if I didn't write them down the moment I thought of them, I wouldn't remember them later.

One of the things that has been on my mind a lot lately is related to my 12/15/12 post that recounted my experience at the Mayo Clinic. Last week I not only received my bill and a letter requesting my permission to use my records for future studies, I also received a copy of the doctor's report from that visit. What I found very interesting was that even though he told me that the reason he was referring me to see a psychiatrist, instead of viewing misophonia as a neurologic issue, was because he thought my symptoms were situational, he never mentioned that specific reason for the referral in the report. (As per my earlier blog post, the reason why he thought my misophonia was situational was because when he asked me whether I was annoyed by triggers I created, I said I didn't think so.) Upon further reflection on the way home that day, it occured to me that I may be more annoyed by my own trigger actions than I indicated. I may not have realized they bothered me because I may subconsiously stop the triggers as soon as I do them - or prevent myself from doing them at all.

This weekend I realized one perfect example of that "protecting myself" from triggers was something I may have been doing subconciously for nearly two decades. One of my triggers is the sound of silverware clanking on chinaware. Well, even though I've had two very nice sets of china since my grad school years, whenever I make a meal for myself, I *always* gravitate to my tupperware dishes and plastic utentils (that is, unless I have company over). This is not a once in a blue moon thing. If it gives you any idea how often I use my plasticware over my chinaware, my cockatiel even imitates the sound of plastic scraping against plastic. (It's actually kinda cute...) I kind of wonder if I had answered to the doctor's question that my own triggers *DO* bother me, perhaps my Mayo visit might have had a different outcome...
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    About the Author

    Emlyn Altman has been suffering with misophonia for over 35 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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