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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

Breaking the Silence!

10/11/2021

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It's been a long time since I've written a blog entry or updated the website. I'd like to say it was due to the pandemic but I stopped long before then for several reasons. One big one being that I was concerned that my blog entries would get back to my prior place of employment and there'd be negative consequences from venting about certain people in leadership who were the cause of the triggers. 

Another reason was that one of my extra-curriculars prior to the pandemic was another source of triggers and many people who caused the triggers were connected to me in Facebook, where links to my blogs are often posted. I knew it would make attending the activity awkward, if not uncomfortable for all parties. Now that I'm no longer at that company or involved in the extracurricular, I feel it's time to dust off this website and bring it up to speed again. It's amazing how many new resources of info are out there, including YouTube videos and support groups. I love how much progress has been made in getting the word out and educating people about Misoophonia.

As devastating as the pandemic is, one thing I can say about it is having the ability to work from home has, for the most part, mitigated most of my triggers. Yes, I still scramble to mute my TV any time commercials come on (for some reason, marketing people have been using whistling as background more often than in the past or taking advantage of people's high-fidelity sound systems to show off how crunchy their chips are). I also have a new feather baby who, when she's not trying to join in my work zoom conversations, she chirps non-stop to get my attention, which only exacerbates any triggers I may be experiencing.

Unfortunately, this past week has brought those tensions to a new high for me in a way that I haven't felt in nearly five years. I've been spoiled by being about to isolate myself from most triggers during the pandemic but in the rare times I do go out, I don't have that kind of control anymore. Last weekend, when I was exposed to a trigger and I asked the person to please stop, instead of just stopping, the person modified what they were doing and proceeded to then ask, "Does this bother you?" When I turned my head away, the person continued modifying what they were doing and asking, "Does this bother you?" The person continued two more times. I can understand an initial trigger being unintentional but to deliberately continue doing different variations of it and asking me if it triggers me is even worse than the initial trigger. Instead of de-escalating the situation as soon as I said, "Please stop," it was like telling someone not to think of a white rabbit. If the rabbit hadn't been on the person's mind to begin with, it is now!

My heart raced at being triggered multiple times and my adrenaline kept building to an all-time high for me. It took all my energy to not bolt out the door or blow up like a bottle of soda shaken and ready to explode - in the middle of a restaurant no less. There's a reason why this condition is often referred to as "Sound Rage," (which is also the title to Judith Krauthamer's wonderful book about Misophonia).  I felt a panic that I haven't felt in a long time. A physical adrenaline burst that shook me to the core. Even a week later as I'm writing this, my hands are shaking and my heart is pounding so hard that I feel the throbbing pulse against my collar bone and at the back of my jaw by my jugular.

I wish I could go into more detail, like the detailed matter of fact blog recounting posts that I've done in the past, but I just haven't been able to calm down  enough. Thinking about what happened brings back the sensations  just as strongly as when the trigger occurred in the first place. On top of that, triggers that I normally can tolerate from my bird at home are now exasperated tenfold so that repetitive chirps to get my attention are as annoying as having a smoke detector with a failing battery at 1am. 

I will say that the experience reminded me about how much this blog and website has not only been an outlet for me to vent my experiences, but also has helped people around the world, whether as a source of comfort for other suffers to know they're not alone, or for people with family/friends/coworkers who want to know what misophonia is all about.

I'm already bracing myself for many more triggers in the upcoming months. I have three upcoming trips planned before the end of the year. I haven't stepped foot in an airport since before the pandemic lockdown started, which is one of the most intense locations for being bombarded by triggers. Holiday time is also a big source of triggers. Avoiding holiday-related triggers is one of the reasons why I've spent Thanksgiving and other holidays by myself for nearly a decade. 

I can only hope that I can get my heart to stop racing soon because adding new triggers on top of the adrenaline I'm already experiencing is going to just make it that much harder to come down. 

Time to break out the kick-boxing gloves!
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Goodbye 2018... Hello 2019!

1/1/2019

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Happy New Year everyone. I'm hoping to start the new year by getting back into the swing of regular blog updates here. All I can say is that 2018 unexpectedly ended quite roughly for me.

This past weekend I found myself being admitted to the hospital ICU for an allergic reaction to an OTC medicine that I've been taking without a problem for the past 30+ years. Evidently, there's some people like me who have allergies that also have a genetic disposition to react to aspirin type of medicines (in my case, naproxyn - aka Aleve). For people with this disposition, the reaction can happen immediately or, in my case, after years of using the medication. All I can say is that when I saw the swelling in my throat (which felt like postnasal drip, or the theme of many a nightmare where I felt like a huge wad of bubblegum was in my throat and I couldn't get rid of it) , I had the calm presence of mind to take myself to Urgent Care to see a doctor. In hindsight, I wish I had gone to the ER right by my home instead of the only 24/7 Urgent Care facility 25 minutes away because they wound up immediately sending me by ambulance to the ER a block away from the clinic. (I didn't realize how serious the situation was).

You may ask, "What does this have to do with misophonia? (the theme of this blog)" Well, my 5+ hour stay in the ER while waiting to be admitted up to the ICU wound up being quite boring, yet misophinia trigger torturous, for me. I was dying to have earplugs, which I was told I might be able to get in the ICU. As much as I would've liked to have taken a nap while waiting for the transfer (it was midnight when I arrived at the ER), I was driven crazy by one of the male nurses seated at the desk outside of my curtained off area whose loud gum cracking and whistling made it impossible for me to relax. In fact, the triggers were so stressful for me, they actually asked if I was on high blood pressure medication b/c my pressure was 185/120! (Normally, I'm around 112/78). I'm sure that the stress of having difficulty breathing and needing IV's put into both arms were a big part of that high blood pressure, but it wouldn't surprise me if the misophonia triggers weren't a big contributor as well. At one point, I actually scooted down to the edge of the gurney to pull back the curtain and snapped, "Will you please stop whistling and cracking your gum?" to the nurse.

I was so relieved when they finally brought me up to the ICU a couple of hours after that.  When I explained to the nurses about my misophonia, they not only brought me a packet with earplugs and an eye mask, another ICU nurse brought me extra earplugs. It wasn't an ideal situation but at least I finally got a little bit of rest after that. I was even surprised when one of the doctors knew what misophonia was. (I can tell you for sure that the male nurse in the ER didn't).

Luckily, the ENT doctors figured out what was wrong with me fairly early in the morning so I was able to be discharged later that afternoon. All I can say is that if I ended 2018 with such chaos, maybe I'll luck out and have a calmer beginning to 2019.

Wishing you all a happy, healthy, and trigger-free new year!
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New Adventures

3/23/2018

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It's hard to believe that just a couple of weeks ago marked my one-year anniversary of my move back to Vegas. It's been such a wonderful new chapter in my life. In fact, I'm happier than I have been in many, MANY, years. I'm in a climate where I'm able to breathe again. I left behind some toxic people in my life. Most importantly though, I'm working at a company where I feel valued, respected, appreciated, am able to focus my efforts on designing creative projects. The one aspect of my new job that has taken me a while to get used to having is that my work hours and stress levels are at a "normal" level, allowing me to actually have a personal life.

One of the benefits of having a personal life again is that I'm finally able to be social and make new friends. In fact, I probably doubled the number of FB friends in the short time I've been back due to having joined fun activity groups (like my acapella choral group). It's a bit strange having to start from scratch again and explain my misophonia to coworkers and the new people I meet, but for the most part people are pretty understanding and really try hard to be aware of my potential triggers.

It's somewhat refreshing, although I'll admit that one person I know has actually taken that consideration to the extreme by constantly asking me if I'd mind if he eats in front of me in his office. (I swear this person is non-stop eating something every half hour). I've tried to tell him that he doesn't need to ask if it's okay, just eat if he is that hungry. I do my best to tolerate triggers as best as I can. I mean, a person has every right to eat food in their own office. I usually only ask people to stop if I'm forced to stay in a situation where I'm unable to use my typical coping tools. I feel like I need to figure out some way to get him to stop asking me if something will bother me. I find that if I don't notice something it doesn't bother me, but as soon as someone brings it to my attention, that's where my focus will go. 

It's sort of like if someone says, "Don't think about a white rabbit." I think the majority of people who hear a statement like that will start thinking about a white rabbit. For me, asking if something might bother me, or asking if I hear something, will spark the trigger. Sometimes it makes me wonder if the person is truly trying to be considerate or if the person may know that pointing triggers out to me actually triggers my condition. I'm hoping it's not the latter, but having been in situations (and hearing other sufferers' accounts of situations) where some people use a person's misophonia sensitivity against them, deliberately creating triggers to make a sufferer uncomfortable - just for the "fun of it," I'd rather not know.
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Back in the Swing of Things

1/12/2018

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TGIF! It's amazing how fast the weeks go when you are happy and enjoy where you are in life. The move back to Vegas has been a good one for me. Love my new job (just passed the 90-day mark a couple of days ago), and am happy in my new home (despite still needing to unpack a few more boxes and hang up my artwork). I'm making new friends too.

Misophonia-wise... Now that I'm not being a hermit in my home anymore (the PNW trees/grasses/shrubs made me very sick) and I'm not working alone in an office, I'm back to the typical exposure of daily life triggers.  My cubicle pod is right next to the kitchenette so there's always the sound of clinking silverware on China. Occassionally I've had to ask someone to stop doing a particular trigger. When I do, for the most part people are understanding. I'm lucky that my pod-mates are conscious of some of the triggers that bother me, and are apologetic if I do mention something is triggering me. One of my pod-mates was even curious to know more about my misophonia.

On the other hand, I still do encounter the occasional person who gets annoyed by my asking to stop a trigger. One situation in particular is the new choral group I joined. I'm so happy that my allergies have cleared up and I can get back to singing again; however, I was assigned a position smack in the center of the risers where all of the choral members stand. One woman, who I can't seem to get away from, originally stood in front of me but is now behind me.  She's triggered me with her knuckle cracking and even whistling , which is really bad because the risers put her mouth at the same level as my ear so the whistling trigger is even worse. At the last rehearsal, I asked her to stop b/c of my sound sensitivity. She looked at me as if I was crazy. Like, "How can you have a sound sensitivity and be in a singing group."

What people don't understand is that it's the TYPE of sound that is bothersome, not all sounds.  The person next to me seemed to understand, but I do worry about what's going to happen in the future with this "culprit." I have to be in my assigned location until April, due to our getting ready for a competition in March and our locations were specifically arranged to get the optimum sound for the group. Once we get beyond the contest though, I think I'm going to bring up my situation with the Director of the group and see if I can be relocated.

We'll see what happens....
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New Year, New Beginnings

12/31/2017

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It's hard to believe that it's been nearly a full year since I last posted an update. Needless to say, I had a valid reason for the lapse.

Some of you may know that my move to the Pacific Northwest did not go as well as I had hoped. Shortly after making the move, back in May of 2015, I became very sick and after dozens of doctors and specialists who poked and prodded me with countless tests, we discovered that I was allergic to all the trees, grasses, and shrubs which severely affected my underlying asthma. Needless to say, if I wasn't forcing myself to go to work, I was literally in bed confined to my home with an integrated HEPA system. It was two and a half years of misery where I had no personal life... Heck, I was barely living at all and I spent what little energy I had left trying to figure out how to move back to a breathable desert climate.

One positive note halfway through my time up in the PNW, I wound up working in an empty office the majority of the time - other than the rare occassion when the Owner of the company would fly back to attend to our most important client. Misophonia-wise, it was a good thing... I didn't have any coworkers rustling noisy bags crunching on chips or crisp vegetables.  Occassionally there was noise coming from outside the office but for the most part, my main source of misophonia triggers came from the rare times I went out in public or the occassional needy whine of my cockatiel when I didn't give him enough attention.

Things got a little worse when our office relocated to the first floor of the adjacent building because little did we know, the space did not have any air conditioning, so I was forced to keep the doors to the outside open - which let in much more noise from people walking around the building. In the end, I couldn't even keep the doors open because the wildfires from the surrounding areas let in too much smoke and ash; so either I had to suffocate from the poor air conditions or smother myself from the lack of circulating air when the doors were closed.

I wound up moving back to Vegas at the end of September and couldn't be happier. Granted, I'm working in the largest firm I've ever worked in my life (over 15,000 people), so now I'm exposed to more misophonia triggers than I've had over the past two plus years, but that's a small price to pay to be able to breathe again.

It's time to put my time in the PNW far behind me and move onward with a fresh outlook for 2018. I'm looking forward to picking up where I last left off with the SenseHaven.com website and also hopefully getting back into the swing of writing my memoir again.  So much misophonia information and progress to update  here. It may take time, but I'm in a better mindset than I have been in over a decade.

Happy New Year to all and may you (or if you're not a sufferer,  may the people you know with misophonia), have relief from misophonia triggers.
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Happy New Year!

1/1/2017

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All I can say is good riddance to 2016. In many ways, as I'm sure similar to others like me, I'm hoping to start with a (relatively) cleaner slate in general and, now that I figured out the new editing interface for this website via my iPad, hopefully I can make more regular (if not more frequent), blog updates. Last December was the first time in the four years since launching the website that I missed a post in the entire month, and that's something I want to change. (Dare I say I'll make it a resolution for the new year?)

I also know I need to start taking better care of myself - including somehow lessening my stress. I've learned over the years that the more stress I have in my life, the more sensitive I am to triggers. Not sure how much I'm going to be able to mitigate my stress at work, given my position, but hopefully I can be more self aware when my stress is going into critical mode.

I know I need to do a better job at keeping fresh earplugs with me (something I slacked off a bit of late). Occasionally I've been triggered during my choral rehearsals and just stood there(with dagger eyes) trying to bear through it but I think I will try to start removing myself from trigger exposures when they happen. I've already mentioned my misophonia to some of my choral mates, so hopefully they'll be understanding.

Let's just hope that 2017 is a hell of a lot better than 2016 was. 😊
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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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Halloween in Hawaii

10/31/2016

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Happy Halloween, everyone! Right now I'm in Hawaii on my first vacation in nearly five years. I'm not here to lounge on the beach though... I'm at a writers' conference hoping to get my butt in gear to finally finish my memoir - telling my story about misophonia. Let's just say that ever since I arrived on the islands, the universe has been sending me signs which I'm interpreting as the universe saying, "It's about time!"

On Saturday, as I was landing at my layover point in Honolulu, I saw a full rainbow at the rainbow. Today, as I was leaving my first workshop day at the retreat portion of the trip, I saw a rainbow sculpture right in front of the building where our classes were being held. (Somehow I didn't notice it when entering the facility). And what an amazing first day it was!
I was one of fifteen students in a memoir writing "Master Class" being taught by Luis Urrea - a Pulitzer Prize finalist. What a fabulous teacher with such an amazing life story to tell. In fact... At the very beginning, when we were introducing ourselves to the group, we all shared our story and what our memoir focus was. So many unique stories, one more fascinating than the other. 

Many things were expressed during the class which hit home to me. One such thought was that "Writing is one of the healing arts. Writing is shamatic. Those who are creative light a signal flame. Those who are lost see the flame and follow the fire until they get home." It really emphasized why I want to write my memoir, and why I created the SenseHaven.com website. I'm doing this because I know how lost I felt before I even knew there was such a condition called misophonia - and the relief I felt when a stranger on a plane told me about it. It changed my life. I no longer believed I was crazy. If I could help one person feel that same relief, I know this journey will have been worth it!

So yes... I am very grateful I decided to sign up for this conference. It has rekindled my passion about this endeavor and I'm eagerly looking forward to these upcoming days - hopefully inspiring me to finally take this memoir effort to the end.

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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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