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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

The kindness of strangers

6/29/2014

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So, here ends another week of traveling. As usual, airports were full of anxious (or bored) passengers waiting for their flights so I won't reiterate those trigger experiences. It's the just same ol' triggers, different day. I did have an interesting experience at this latest destination though... I'm used to traveling for business by myself, so eating solo at restaurants is nothing new to me. This time however, I may have started off by myself but I ended with a fun group of flight attendants who were enjoying the city before heading back to Atlanta the next day.
The day started with my going to the visitors' center to get a train schedule so I'd know my options for heading back to the airport the next day. I asked the representatives there where would be a good place to enjoy a happy hour drink and munchies that evening. The first woman responded, "Everyplace is good for happy hour!" (No help there...) but when I pushed for more specific information, the second
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woman said that there was a restaurant on the 30th floor of one of the prominent skyscrapers that had a great view of the city. She wasn't wrong! I got to the restaurant just as happy hour was starting, so I was able to snag a table right by the window overlooking the river and other sights. At first I felt a bit guilty about taking a table for four when I was just sitting by myself, but the server assured me that it was first come, first served and that I didn't need to concern myself. (It was a Monday, so I didn't think happy hour would be as busy as it wound up being.)

My commandeering such a large table wound up being a good thing though. About an hour into my meal, two women approached me asking if they, and a third woman, could join me. I said, "Absolutely!" and I'm so glad I did. The three women were all flight attendants who had known each other for over twenty years. They were very nice and I enjoyed our conversations about the places where they've traveled, as well as their interest in my current trip. At one point, I must've mentioned how although I enjoy traveling to new places, my sound sensitivity can make it a bit stressful at times too. The flight attendant who was sitting next to me inquired more about my misophonia and when I described it to her, she said she knew someone who got very annoyed with eating noises, among other things, too. I wound up giving her the business card that I developed for this website so she could share it with her friend.

At one point, when the topic changed to their kids and family, I mentioned how my "baby" is a little cockatiel and as much as I'd love to travel with him, the idea of spending $175 to put him under the seat in-front of me was not appealing. That's when one of the women suggested that I get him authorized to
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be an "Emotional Support Animal." Since I was already diagnosed with a medical condition (misophonia), all it would require is to get a note from the doctor and let the airline know. Then I'd be allowed to bring my bird on the plane and hold him in my lap, instead of having to put him under the seat in front of me. She also mentioned I might have to get one of those "Emotional Support Animal" vests, but I couldn't imagine getting one so small, not to mention that I think my bird would have a fit if I tried to put a vest on him.  One of the other attendants agreed that getting him authorized to be an emotional support animal should be possible, and very likely would then allow me to have him with me while traveling without having to pay the $175 fee too.

What's ironic is when I went to the airport the next evening, I saw a woman with a little dog that was wearing one of those "Emotional Support Animal" vests. I couldn't believe the coincidence! In all the years of traveling, I've never seen one of
those vests, only the ones  for service animals (usually when the owner is blind) or the TSA drug sniffing dogs (where the vest says not to touch the dog while he's working).  Perhaps it's a sign that I should consider getting my little guy approved for future travels. All I can do is try...

So, in letting a group of strangers join me for drinks, I not only received great company and conversation in return, I also learned something new that would be useful for coping with misophonia while traveling.
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Minding my misophonia madness

6/21/2014

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My oh my... What a whirlwind week of misophonia mindfulness. (Gotta love alliteration!) Much of it was sparked by traveling - of which more to come this week. (All those anxious travelers in airports and on the planes makes for a trigger filled trip.)
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One of the things about misophonia is how simple, innocuous sensations (sounds/sights/smells/tactile feelings) that don't seem to bother other people really rub sufferers the wrong way. I've mentioned before that visual triggers bother me just as much as aural ones and although usually that means someone doing a repetitive motion (such as bouncing their feet, twirling their hair, drumming their fingers, twirling their pen), every now

and then I'll come across a trigger that doesn't involve motion at all. Anyway, earlier this week on the plane was one such "non-moving" trigger for me: When someone next to me or sitting in front of me rests their hands on the seat in front of them, whether just to hold the paper they're reading or what looks like they're bracing themselves for a sudden stop. It seems like such an irrational trigger, but even back when I was in DC riding the metro to/from work, it would bother me to no end when people did that while reading the paper. At first I thought it only bothered me when people did that while behind me, because I didn't like how close their hands were resting by my neck, or every now and then they'd be resting their hands on my hair - which really hurts if you turn your head and don't know they're doing that. (Ah the joys of having long hair.) Then I started noticing it when people were doing it in front of me too. I'd think to myself, "Is that paper really THAT heavy you have to support your arms like that?" The anger would build such that I felt like I wanted to smack their hands off of the seat or imagined telling them to keep their hands to their own seat. Of course, that was just an internal monologue, but such is the case with so many of my trigger experiences.

In times when I experience those types of triggers, such as on the plane (as seen in the above photo - and yes, I didn't hesitate taking that photo to use as an example), if I couldn't position myself or my hair to


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What a beautiful day...

6/12/2014

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One of the things that I like about being in the Midwest is that when the weather is good, the days are very beautiful. Barely a wisp of a cloud in the bright blue sky... A gentle breeze blowing... Wonderful! It's days like this that I can get very contemplative with my thoughts...

The past couple of days I've been corresponding with a few readers of this site, particularly about the last couple of posts where I talk about my Mindfulness Cognitive Therapy sessions. Something to note though... I don't see these sessions as ultimately curing me of my misophonia. I still believe it is a neurological condition that will require much more than practicing mindfulness meditation. No... I'm seeing these sessions as a way to help take better care of myself and try to make my symptoms less severe so that I don't feel like I have to "flee" as much, or avoid altogether, trigger situations. I've learned so much about myself over the past couple of weeks - especially how my putting my career before anything else (ultimately stressing me up the wazoo), may have needlessly exacerbated my misophonia. 

I think back to when I was at school and even though I worked hard, I made an effort to do many extra-curricular activities too, which may have been why my symptoms were less severe. I still had school stresses, but I had fun outlets with which to release them. Even my very first day of grad school, when the professors gathered us all in a room and told us, "Don't even think about doing extra-curriculars, even work study. You won't have the time!" I *MADE* the time. That semester I had seven classes, but I not only was a welding teaching assistant in the school's shop building (having welded for three years as an undergrad), I also sang in the choral society AND did theater tech work for one of the other performing arts groups. It was a lot on my plate, but I think it's what saved me from having severe misophonia symptoms back then.

In the past dozen years, I've put work before everything and now I know that was a BIG mistake! The therapist pointed out how so many medical conditions are caused - or significantly worsened - by stress. All my weight gain and sleepless nights could have been avoided if I spent more time doing things I enjoyed or having fun. These past couple of months, doing my own thing as a lighting consultant (until I found a company where I'd really be happy) has given me the downtime break I needed to "reboot" myself. I'm looking forward to wherever I end up as an opportunity to start over and take better care of my life. If I don't... Who will?

So while my quest for relief may not reveal a cure for misophonia in the near future, every step I take along this path towards relief teaches me more about misophonia, and I hope others as well. Perhaps my journey will help someone else - a doctor or researcher perhaps - get one step closer to finding a cure!      :-)

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What happens in Vegas...

6/8/2014

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... doesn't necessarily stay in Vegas (at least where my misophonia is concerned.)   ;-)

Last week was quite a hectic week at my annual lighting conference. (So, what else is new?) Unfortunately, the red-eye flight back to the Midwest late Thursday night completely wiped me out. (Am I really getting THAT old?) I got back to my apartment just before noon and I was out cold until about 2 a.m. Saturday morning. Let's just say that the rest of Saturday was more of the same.

Traveling for conferences is the same ol' thing with me, although I did try to do some of my Mindfulness thinking on the plane. (Try being the key word here.) When I got to the hotel, I was almost at the front of the line when I heard the cracking and smacking of a guy popping his chewing gum behind me. Let's just say that taking a deep breath and holding it for a count of five doesn't work too well when you're inhaling the air from a casino floor. (BLEAH!!!) When I finally made it up to my room (which didn't happen until a couple of hours later because this particular hotel charges a $10 fee for checking in before 3 p.m.), I tried again to decompress with some breathing exercises while lying on my bed... That is, until housekeeping opened my door and THEN said "housekeeping," which totally caught me off guard. (The housekeeping guy complained that I didn't put the "Do Not Disturb" sign on the door, to which I pointed out that my room did not have a Do Not Disturb sign. Duh!)

Later that evening, I enjoyed a relaxing drink with a mentor/colleague at the top of the Stratosphere (for which he designed the interior renovations). I'm telling you, the view of the lights across the city, all the way to the mountains, really touched this lighting designer's heart. I finally was able to relax after a LONG day of typical traveling triggers.
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Tuesday I went to the conference and walked the exhibition floor a bit. (Talk about glare bombs! It's amazing how many manufacturers think the way to impress lighting designers with their new LED products is to blind them! Kinda hard to design lighting if you can't see anymore. LOL! It was great bumping into colleagues, some of whom I hadn't seen in YEARS.

Later that afternoon, I sat in back-to-back presentations: the first was a keynote speech by Senator Gephardt, who talked about the benefits of lighting for our well-being, followed by two panel sessions, one on healthcare issues related to lighting, the other relating to hospitality lighting design issues. I tried to be proactive by sitting at a table directly in front of the speakers, but unfortunately... although I picked the "perfect" seat that faced forward, there were gentlemen on either side of me that were closer to the stage, and therefore in my peripheral vision. One wouldn't stop clicking/tapping his pen, the other wouldn't stop typing on his cell phone. (Whether he was texting or writing emails, I couldn't say.) I tried visually blocking the triggers with my hair and holding my hands up (like I was resting my head on my hands, elbows on the table)... I must've looked ridiculous. In the end, I also wound up having to put earplugs in because two people at a table to the side were having a conversation on top of the presentations. I so wanted to walk over and ask them to take their conversation outside, but I didn't. I just closed my eyes, took a couple of deep breaths, and tried to focus on the presentation again.

The rest of the conference was just rush, rush, rush... Going to seminars, leading a national committee meeting (I was just made chair), meeting with companies, checking out the (blinding) products... I actually looked forward to the ends of the days, when I could just stretch out on my bed and relax. (Normally, I'd try to take a couple of hours to enjoy at a spa or at a show, but there wasn't any time on this trip. Looking forward to the next visit back to Vegas though.)

I did have an interesting experience on one of the plane legs back.  It was the first time in a while that I was flying coach again, so the crampedness of the seats was especially uncomfortable. The plane was packed like a sardine and although I was in a window seat, leaning away from the arm rest, the arm of the guy next to me was hanging over my seat, so the hair on his arm kept brushing against my arm. (I can't stand when my own hair falls and lands on my arm, let alone somebody else's arm that keeps brushing against mine.)Normally when that happens to me, I put a magazine between my arm and the other person's. For some reason, the constant pressure of a flat, hard surface is less annoying than the light brush of hair against my arm, but given the incident I had on a metro bus back in DC, I tapped the guy on the shoulder and said that I didn't want him to be offended by my putting the magazine between us, but I have a medical condition that makes me super sensitive to certain tactile feelings.  He looked at me and said he wasn't offended. In fact, he was very nice about the whole thing. (What a relief! I don't know what I would have done if I pissed him off. They overbooked the flight so there was no where else for me to go.)  Hopefully, next time I travel I can save up enough to fly first class again. Those seats are AWESOME, especiall!  :-) 


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Here We Go Again!

6/2/2014

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I'm sitting at the airline gate, waiting to board the first leg of my flight to Las Vegas. I'm headed to another conference and have a jam packed week ahead of me. (Just about as packed as the two flights that are taking me there.)

This will be the first time I will really be able to put my mindfulness practice into full play. (I've already practiced some breathing exercises while waiting in line to see the gate person. Something tells me in going to get a lot of opportunities to use those exercises.)

I'm very much looking forward to this trip, not only because I love Vegas, but because I'm meeting up with many people in my industry - some friends and colleagues as well as a few interviews with potential employers too.

Needless to say, this is going to be a very exciting trip!
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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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