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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

Thanks for Giving Your Compassion

11/26/2016

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Thanksgiving came and went in a blur. I am very thankful for the support of my friends and family through the years of my many moves cross-country and especially through my struggles with misophonia. I am so very grateful for everyone's support - especially with respect to a condition that not many people know about or understand. It is your compassion that makes this daily struggle in a sensory intense world more bearable to me and for that, I am eternally grateful.

It may seem like I'm making a big deal out of something that is akin to the "golden rule" of treating others as you'd want be treated yourself but you'd be surprised how many people would sooner be a bully and use knowledge of a person's sensitivities as a means to torment that person rather than offer sympathy.

It's why stories like what I'm about to share really hit home to me. A friend who also has misophonia recently posted an article in the New York Post about a woman with misophonia who committed suicide because she was overwhelmed by a world full of triggers. (http://nypost.com/2016/11/16/every-day-noises-drove-this-historian-to-suicide/).  It may be a difficult article to read, but if you really want to understand how traumatic this condition is, I recommend that you try. Here was a successful, well-educated woman whose misophonia affected her marriage, her health, and her life.

For those who know me and know my mother committed suicide, I don't want you to worry. The worst misophonia attack I've ever had happened at the beginning of this month, and it mainly manifested as my tearing up during a workshop as I was overwhelmed with triggers in a situation where I did not want to remove myself; but I've never gotten to the point of ever considering taking my life. For me, misophonia triggers started to make me become a recluse in my own home, which was not entirely trigger-free - especially when you consider my "baby," a bird who whines for attention when he's not on my shoulder. (The one trigger at home that will push me to the point of leaving the house). Lately, I've been working very hard to force myself out of my "comfort zone" at home or the office to be more social and meet new people.

I sympathize with the woman in the article though. It's hard to live in a world that seems to attack any semblance of comfort. It's forced me to be proactive about avoiding triggers however I can - whether by using earplugs, earbuds, or avoiding situations altogether. I may not always be successful, but this goes back to my original comment about being thankful for my friends and family who look out for my comfort. It may not seem like a big deal when we go to a restuarant and you wait to see where I want to sit, but believe me... That little gesture means more to me than you'll ever know.   :-)
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Back to reality

11/12/2016

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It's weird being back to the PNW... Just one week ago, I was enjoying sunny Hawaii but now that moment seems like just a blink of an eye so long ago. Where did time fly?

I'm sitting here at my writing MeetUp trying to implement all that I've learned from my time at the retreat/conference yet I'm struggling  to figure out where to begin. I know that I want to change quite a bit of my memoir, but taking that first swing of the hatchet is more daunting than I thought. I figured that perhaps writing a new blog entry might help to warm up my fingers and writer's cap.

This week was strange trying to get back into the swing of things. For the most part, I had the office to myself but from the moment I walked in the door on Tuesday, I knew it was going to be a LONG week of being triggered. The heating unit had been left on overnight, which seemed odd since the area had record high temperatures of late. As soon as I turned off the HVAC system though, I heard it. A whirring sound with three pitches that didn't seem to go with each other. I thought it was just the HVAC system winding down but after a brief four second pause they repeated... and repeated... and repeated. Every five seconds those three notes... over and over and over... I thought that maybe it would shut off after some time but one hour went into the next... It was surreal! I went downstairs and asked our landlord if someone could come take a look at it. A couple of hours later he came up, noticed it had to do with the fire suppression system, and said he'd get someone to come in and take a look at it.

Long story short... The HVAC guy didn't come in until FRIDAY - four days later! In those four days I kept joking that I wanted to take a baseball bat to the thing. I mean, can you imagine having a random noise happen every five seconds for four days?!? I think it would've driven anyone crazy - even if they didn't have misophonia! At one point, I even had a classical satellite radio station playing loud on my computer speakers. Normally I wouldn't be playing music out loud but I was trying so hard to drown out the whirring sound while still being able to hear the phone ring or if someone entered the office (since my back is normally towards the door). When the Owner of my company came in. I rushed to turn off the music but he was actually okay with it. (Thank goodness!) In fact, he wanted to guess what song was playing. (He was a music major in college.) He guessed right!

Although the HVAC guy wasn't able to completely fix the problem (the component is tied to the fire alarm system, which would have been set off if he tried to replace it), at least he was able to do something enough so that the whirring sound wasn't as loud as it had been. Hopefully, he'll be able to fix it for good soon.   :-)
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Overwhelmed...

11/6/2016

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It's amazing how fluid time is... Although I'm sitting here in Hawaii writing this update, thinking back to earlier events during the week, I know this moment will disappear within a blink of an eye. I've looked forward to this trip since the beginning of the year, and was fully immersed in the whole experience, I'm sad that it has to end.

One of the experiences I wanted to relay is something that has taken me the past three days to be able to verbalize. I was very excited about the last day of the Memoir Master Class workshop, not only to be able to share and get feedback with my writings, but also to hear the touching stories written by the other fourteen students in the class. What happened that last day was unlike any misophonia experience I've ever had in the past 35+ years of my condition...

It started with my driving two of my classmates to the facilities very early that morning, each one of us hoping to claim our ideal spot and one of the few padded office chairs in the room (instead of the smaller folding chairs). Having a good understanding of some of my classmates' ticks and habits during the past three days of classes, I thought I picked the ideal spot to minimize triggers. I even convinced one of my driving "copilots" to switch tables in the hopes of preventing one of the other classmates, who I knew triggered me over the past couple of days, from sitting next to me. Little did I know that my copilot had restless legs and would be the trigger that started a floodgate for me that morning.

The other factor I hadn't considered when being proactive with my choosing where to sit is that we would be going around the room telling our stories, so there was no single seat where I would not have someone's triggering actions within eye or earshot. This was my biggest mistake...

From the moment the rest of the class came in, I was doomed. People slurping their hot morning coffee or scraping the last bit of yogurt in their bowl filled my ears. Others were rocking back and forth in their comfy swivel chairs, bouncing their legs, playing with their empty cups, tapping their feet, clicking their pens, playing with their hair, rustling food out of crinkly bags, typing last minute additions on their computers.... It was one trigger after the other. I couldn't look at the speakers presenting their stories because inevitably there was always someone within my direct line of sight, or even peripherally in the corner of my eye, who was triggering me. 

My mind spiraled out of control. I wanted so hard to hear and feel my classmates' stories but my mind was racing, trying to escape from the bombardment of misophonia triggers. After each story, people would say what stood out to them and my frustration grew because I didn't hear that phrase or absorb the general theme of that person's story... I didn't hear any of what was said because my mind was just overwhelmed with triggers and the rage that was boiling from them. I wanted to leave the room, but I also wanted to stay and hear each other's stories. In the short time we were together, we had become friends - even like family - and I wanted to hear their voices more, but I was so torn with conflict. Wanting to run away but wanting to stay too. Wanting to hear peoples' words and see their expressions yet forced to wear my earplugs and find some neutral visual place to calm my mind. I wound up staring at my cup of tea in the middle of the table, because it was the one place that seemed motionless.

I felt my eyes well up with frustration. My misophonia has never overwhelmed me like that before. After the fifth or sixth person finished speaking and we were able to take a break, my other copilot saw the distraught in my eyes and suggested that I try to walk it off. I went outside and over to the fence with the rainbow that I saw earlier in the week, barely able to keep my composure. I had to stand on my tippy toes to rest my arms on top of the fence and it was the first time that I discovered there were multiple water fountains on the other side. I tried to focus on the sounds of the bubbling water. I tried to calm my mind.

I finally got to a point where my eyes stopped waterering and walked back to the facility. Before I went back into the classroom though, I went into the bathroom and splashed water in my face. The coolness felt good against my flushed skin.

Despite joining the group again with a somewhat calmer mindset, I still was unable to absorb my classmates' stories. I tried closing my eyes to focus on their words but it wound up being a lost cause for me. In fact, after class ended I wound up going back to my hotel room and collapsing for over four hours. I was mentally exhausted and was blown away by the physical toll it took on me.

Thank goodness we exchanged email addresses at the beginning of the workshop and I was able to ask several classmates to email me what they read that morning. Hopefully, I'll be able to read them in a trigger-free environment and immerse myself in their narratives more than I was able to do that day.

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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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