Thank you all for being patient with me with regard to the delay in my blog postings. As predicted in my last post, last week was very hectic for me at the conference and after that, I've been busy traveling from Philly to DC to NYC while trying to play catch-up with friends and family. (That, plus it took me a while to get my folks' internet up and running again...) So much to tell since my last blog entry but rather than write a long tome here, I'll try to break it into multiple, (relatively) smaller posts over the next several days.

As mentioned in my previous post, last week was the first time I've attended/spoke at a huge, week-long conference since being diagnosed with misophonia. (Definitely, the first conference I've attended since starting this website/blog.) Needless to say, I knew I was going to be very observant of my experiences as they related to my misophonia. I noticed a lot of triggers affecting me right from the get go. I don't mind flying in general, and my years in DC helped make me a real pro at getting through TSA very quickly. Once I got to the gate though, I was very aware of surrounding triggers.

Normally, I'm able to hang out in airline club lounges before boarding the planes (where there are many quiet areas and places to get away from the crowds); but unfortunately, my origin airport in the Midwest was really small - so small, in fact, that it doesn't have any club lounges. So, I found myself sitting at a crowded gate trying to use my long hair to shield my eyes from anxious travelers sitting around me nervously bouncing their legs/feet and figiting with their hands. At one point, I wound up having to switch seats when a person reeking of cigarette smoke sat down next to me (with only one empty seat between us.) Every now and then, a person walked past the gate while whistling too. (Luckily, I always keep a pair of earplugs handy in my purse and, if I'm wearing jeans, in my pocket too.) I wasn't surprised at any of these triggers. Quite the contrary, I've gotten accustomed to expecting them in crowded waiting area situations. Once on the plane, I was fortunate to be in a single seat row and as soon as we got to 10,000 feet, I immersed myself in a computer game for much of the flight and was oblivious to my surroundings. 

When we landed, I had a two-hour layover and looked forward to spending as much time as I could in the airline's lounge before heading to my next flight. In so many ways, club lounges are wonderful refuges to escape from potential triggers while traveling. Depending on how long my layover is, I'll even pay for a day pass just to gain access to these havens. They not only have special quiet areas, the one I visited during this particular layover had wonderful groupings of seats with extremely high backs/sides - completely isolating a person from any potential triggers in her surroundings. (See photo below.)

I enjoyed relaxing in that plush chair until the last possible minute and by the time I got to the gate for my next flight, they had already started boarding.

The second leg was pretty uneventful trigger-wise until after we landed, when I took a taxi from the airport to the hotel. This particular driver wouldn't stop drumming his hands on the steering wheel the entire ride. I quickly put my earplugs in my ears to block the tapping sound but then he started asking me questions. I usually enjoy chatting with drivers on my way to my destination, but every time I took my earplugs out to hear what he was asking me, the sound of his drumming the steering wheel annoyed me. It got to a point where I said to him, "I don't mean to be rude but I'm wearing earplugs right now because your banging on the steering wheel is annoying. I'm happy to talk with you but please stop drumming the steering wheel."  Unfortunately,  he kept drumming so I put my earplugs back in, but he still continued to try to have a conversation with me. I honestly don't think he was trying to be malicious. I just think he didn't understand my discomfort.

Although the journey to the conference was a little rough trigger-wise, I couldn't have asked for a better room once I got to the hotel. I always mention to the front desk when checking into a hotel that I'm sensitive to sounds and prefer to be on a high floor as far away from the elevator lobby or housekeeping doors as possible. (From past experiences, I've found that people waiting for the elevators tend to have loud conversations and I don't like hearing the constant door slamming of the doors to the area where housekeepers have their separate elevator and storage area.) This particular hotel was "U" shaped and the person who checked me in put me in a room at the far end of the hallway on the 15th floor. It was a perfect corner room with only one adjacent guestroom (so less likely to hear noises from neighboring guests.) The rest of the evening was very enjoyable. I enjoyed a relaxing dinner and a drink before calling it a night. I knew it was going to be a busy week and I wanted to hit the ground running when the conference started in the morning.

Next post: Conference week - Part 2... "During the conference"

Okay... I'm long overdue for posting a new entry. It's been an extremely hectic week trying to wrap things up at the office before heading back east for two weeks to speak at a conference, see friends in DC/NJ, as well as visit family in NYC while I'm out there. No sooner do I get back then I'm heading west to Vegas to speak at a second conference. Needless to say, I've been very busy and it's left little time to write in general. (For those of you in Florida, check out the "Support Venues" page. I just uploaded information about a local support group that I found out is planning to have a meeting in a couple of months.)

One would hope that being pulled in so many directions would make me notice my surrounding triggers at the office less, but no such luck. It just made me frustrated at myself to have been so busy that when I heard a trigger, I realized that I forgot to put in my earbuds/earplugs. Oh well. At least getting into the office early and working late meant that there were a few hours I could work when no one else was around to create triggers.

These next couple of weeks will be very interesting for me though. It will be the first time since being diagnosed with misophonia that I've spent a whole week as an attendee at a conference as large as the one next week. (I don't count the one at which I spoke last September because I was only there for three days and was so sick with a cold, I only got out of bed to present and maybe to attend one or two networking socials in the evening.) Conferences are always tricky environments for my misophonia. As a professional, part of the benefits of attending conferences is taking advantage of all the seminars and networking opportunities; however... Networking opportunities mean LOTS of people who are eating and drinking (I have a lot of eating/drinking triggers) but even more so... Sitting in meeting rooms trying to pay attention to a speaker is almost impossible for me to do anymore. I wind up trying to get to the session super early so I can sit in the first row directly in front of the speaker/screen (eliminating the majority of my visual triggers but creating the potential of tactile triggers when people in the row behind rest their feet or bags on my row of chairs), but that's not always possible. If I don't get there early enough, then I wind up having to switch seats multiple times during the presentation or walk out entirely whenever I experience triggers by the other attendees surrounding me. I already know that the seminar that I'm presenting is expected to have over 120 people. (Hopefully, there won't be any gum chewers in the front row. LOL!)

Then there's the aspect of traveling in general to get to and from conferences. I talk a little bit about one of my plane misophonia trigger experiences on 4/12/13 in a response to a reader's comment  to my 2/27/13 post on Auditory Stimuli for Coping with Triggers post. (I find it fascinating to see how these follow-up discussions lead to other related topics...) Flying is always "fun" because if I'm not dealing with tactile triggers of the person's arm touching mine while sharing the same armrest, there are other things that arise in a confined plane cabin or even just at the terminal waiting to board.

Another interesting thing about my upcoming trip is that it will also be the first time that I'll be spending a significant amount of time at home with my aunt and uncle since I decided to actually write a memoir about the condition. We've had many discussions about what I'm going through, about my past, even just about the condition in general, but only over the phone. Now I'll not only be able to talk with them about it in person, but can also show them information from the web - especially some of the misophonia discussion groups - and other sources. (Their internet has been down for several months now and since I'm the geek of the family, they're waiting for me to come home to fix it. So, this'll be the first opportunity they'll have to see this website and especially, to see this blog.)

I'll do my best to post updates while I'm away but if I'm unable to do so, at least now you'll know why. (Just know that if that happens, I'll most likely be posting many catch-up posts when I get back to the Midwest.)

Ever since I discovered I had misophonia, I've been doing a lot of thinking about my life. I've reconnected with people with whom I haven't touched base in years. I've dusted off experiences that had become faded memories, trying to understand if and how my misophonia might have contributed to them. I've even had many cerebral conversations with my folks about my past, seeing the red flags through the eyes of "Monday morning quarterbacks," wondering how things may have been different if we really knew what was going on - not to mention trying to figure out how it's playing in my present life. I've never been much into theoretical thinking, (give me tangible math equations over theoretical any day), but lately my mind has wandered to ideas just for the sake of pondering them - even if I don't come up with any definitive answers. This weekend has been no exception.

It started with the idea, "Is ignorance bliss?" I thought to myself, "Even though I've had misophonia for decades, am I better off now that I know what it is, or was I better before I knew?" That might sound like a stupid question, because ever since I found out I had misophonia, I finally feel like I'm not alone/crazy with my frustrations about certain sounds. The reason why I thought about the question was because before I found out why I was annoyed at whistling, eating noises, etc., I just thought I had sensitive ears. (Small problem.) Now that I know about misophonia, I associate all my visual, tactile, smell and taste annoyances to the condition too and I'm hyper-aware of my environment as a whole. (Bigger problem.) Has the knowledge about misophonia actually added to my stresses?

Which brought me to my next thought... Every now and then I think about what the doctor at the Mayo Clinic said when I went to see if they could help me address my misophonia. That it's a conditional/situational issue, not neurologic, and how he referred me to their mental health group. (I did try to see if there was anyone knowledgeable about the condition in their audiology department before I headed home, but was told there wasn't.) I've had several other doctors since then push the mental health/occupational therapy route as well, which got me thinking about the "Which came first? The chicken or the egg?" question... How many times have I read or heard comments about a person's misophonia being aggravated by stress/anxiety/depression/etc. but what about the possibility that a person's misophonia is what caused the stress/anxiety/depression/etc. in the first place? Which came first? The body/mind's stress towards triggers or triggers being created by stress on the body/mind? (I'm more of the belief that the triggers came first.)

The reason why I believe doctors lean towards the latter option with me has to do with my family history. As much as I believe whole-heartedly about providing a doctor as much information as possible about my (and my family's) history to help solve the puzzle about this condition, I've come to the realization that in my case, sometimes being so forthcoming about my family history automatically creates biases that prevent doctors from even remotely considering a physiological cause of misophonia for me. I've hesitated sharing my background here in this forum for a long time but given the second "deep thought" above, I feel like sharing may be a good thing, because it shows how some misophonia sufferers like myself have other hurdles to jump when seeking help from a medical doctor.

To make a long story short: When I was eleven, my father died of a heart attack and my mother committed suicide less than a year later. As soon as doctors hear "suicide" though, they've subconsciously rubber stamped "SUICIDE VICTIM" on my forehead and become biased that my misophonia is a direct result of these tragedies. That I must have some mental issues like my mother did... Never mind the fact that some of my triggers began before either of them passed away. They don't consider the fact that my father's sister and her family took me into their home and showered me with love, support, and encouragement from day one. That I really wasn't close with my mother, so she hardly influenced who I  am today. (Heck, my aunt has been a greater influence on my life than my mother ever was.) That I am a true renaissance woman who is a unique combination of techie (computers and other sciences) and creative (sculpture, music, writing, theatrical). That I excelled in school: graduating Cum Laude from Mt. Holyoke College, as well as receiving masters degrees from UPenn and Harvard (I was top of my class in Harvard). That I became a leader in my industry, and even have worldwide notoriety from my professional writings and conference presentations. Haven't doctors ever heard of people getting stronger after major tragedies instead of weaker? Don't doctors realize that there are thousands of misophonia sufferers in the world that never had to deal with the kind of tragedies that I did?

For the most part, I don't tell people about my background because those tragic events are not the focus of who I am today. The last thing I want people to do is to change their demeanor towards me because of the stigma of something my mother did, not me. As far as people are concerned (particularly my coworkers and general acquaintances), my aunt and uncle are my parents and my cousins are my brother and sister. That's the only way that people can understand the true nature of our family dynamic.

It makes me have one more deep thought about my misophonia: Is it better to give full disclosure about a person's FAMILY history when seeking treatment for misophonia or is it sometimes better to  provide that information on a "need to know" basis to prevent a snap judgment which may cloud the issue?

I may ponder the above questions for years to come...

I just saw a posting by a behavioral scientist who gave a presentation at the First Annual Misophonia Conference this past February. He wrote that he's giving a free webinar repeat of his presentation next Thursday and is doing a survey to find out which time slots work best for people. He's going to talk about how misophonia may develop from a behavioral scientist's perspective. I don't know anything more about it but if it winds up being at a time when I can join the webinar, I'm certainly going to do so.  It will be interesting to hear a different perspective about the condition.

If you are interested in hearing the presentation and want to take part in the survey, the link is here:

http://www.surveymonkey.com/s/6363VXQ

At the end of the survey, he has a field for people's email address so that he can let responders know when the actual time of the webinar will be.

I'll admit, I've always had a scientific mindset and always explored as many options as possible when given a problem to solve. Sometimes I overcomplicate things, but every now and then I discover something interesting in the process. Today is no exception...

For the past couple of hours, I've been updating this SenseHaven.com website and trying to gather my thoughts before writing more in my memoir. Over the past couple of months, I've contemplated starting a local support group for people with misophonia, but I wanted to connect up with other established groups to see how they organized their meetings. I checked out MeetUp.com to see if anyone has formed a misophonia support MeetUp group and was surprised to find only one in the entire world. (It didn't surprise me that it's located in the UK, especially since the one misophonia foundation I've found is also in the UK.)

I explored the UK Misophonia (Sound Sensitivity) Support Group MeetUp site and found many interesting articles about misophonia/hyperacusis/tinnitus. The more I explored the articles, the more my curiosity was piqued and it led me to the Sensory Processing Disorder Foundation  website. Could it be that what I have is actually sensory processing disorder (aka "Sensory integration dysfunction") and not misophonia?

According to the website, "While most of us have occasional difficulties processing sensory information, for children and adults with SPD, these difficulties are chronic, and they disrupt everyday life... [A] person with SPD may over-respond to sensation and find clothing, physical contact, light, sound, food, or other sensory input to be unbearable..." (Excerpt from the SPD Foundation's "About SPD" webpage)

Part of the problem with the term "misophonia" is that the name specifically translates to a hearing issue (miso = "hatred of," phonia = "sound"), and yet so many of sufferers have visual and tactile (as well as even smell and taste) triggers too. One doctor I contacted told me he's encouraged people in his profession not to use the term "misophonia," but to use the term "Annoyance Hyperacusis" instead since their studies determined that condition includes hyper-responses to smell, pain, and vision in addition to sound.

Although I'm going to continue my investigation into misophonia, the information I found today has inspired me to open my search to other possibilities too...

Today I decided to take it easy and just veg - something I don't do much anymore. It was a frantic week at work and my tension has been quite high all week. (So what else is new?) Too many projects due at the same time, last minute "drive by" fires springing up out of nowhere that had to be put out immediately, trying to get ready for one conference presentation I'm giving in Philly in two and a half weeks followed by another one in Vegas two weeks after that, not to mention my misophonia working on overdrive every time one of my coworkers on the lower level opens a can of soda. (He says he's "cut down" to three cans a day, but I'm not convinced.) Of course it doesn't help that I haven't been wearing my noise cancelling earbuds regularly because I'm constantly on/off the phone and trying to coordinate with multiple teammates about project issues. With my brain running a million miles a minute trying to juggle everything in my professional life and trying to squeeze in moments here and there to work on my memoir, (that's without having much of a social life), it makes it tough to find quiet time just for myself to decompress.

So, today was just a day to relax and collect myself before the next whirlwind round that's going to hit me. I decided to make some pudding, a treat I haven't had  in many years. Since most of my plastic bowls were in the dishwasher, not to  mention the recipe called for COLD milk, I whisked everything together in a metal bowl. Next thing I know,  I heard my cockatiel imitating the sound of metal scraping against metal with every stroke of the whisk. I'm sure he was just trying to get my attention, since my focus was on making the creamy pudding, but that sound I can handle. In some ways, I think it's kind of cute when he does that (unlike when he makes a whiney sound every couple of seconds to get my attention. That's the only trigger in my apartment that drives me away.)

Anyway, it reminded me again about the reason why I don't typically use chinaware (or metalware) if I don't have to do so. Although some cockatiels can imitate words, my little guy only imitates sounds: microwave beeps (I swear I can cook without it), my laugh, kissy sounds, but the one that sticks out most in my mind is when he imitates the sound of metal scraping against plastic (usually at the same time I'm scraping the last bit of ice cream from my Tupperware bowl.) If it weren't for my realizing several years ago what he was trying to imitate with that last sound, I might not have been able to make the connection that the reason why I've used plasticware instead of metal silverware and chinaware over the past two decades is because my body subconsciously wanted to avoid the "clinking" sound of metal on china that's one of my triggers.

I guess I should feel lucky that only one of the sounds he makes is a trigger for me. The rest of them just make me laugh - especially when he imitates my laugh and we wind up laughing at each other.    :-)

I'm still convinced that there's something to the "Midwest Nice" mentality that's different than my prior experiences on the east coast. Every now and then, I still hear the fingernails tapping from the other side of my cubicle wall, even after I gave the fabric samples to my coworker. (See my 3/12/13 post for a little recap.) Today I walked over to her desk and noticed that the squares were still there, but shuffled a little bit amongst the sea of other papers on her desk. When I realized that those little squares probably aren't going to cut is because of how little they covered the desk and how much they shifted, I offered to bring in a larger piece of felt from home (one that would substantially cover the wood surface). I was a bit hesitant saying something because I'm sure it's a subconscious action on her part but again, her understanding reaction totally surprised me. She was very willing to try it if I thought it would help me.

We talked quite a bit about it and I found her concern that she had been disturbing me very comforting. I explained that it's so frustrating that this is something about my body with which I have no control. It bothers me that I'm bothered by such trivial things. The reason why I'm usually hesitant to ask people to stop is not so much that I'm worried about them thinking I'm crazy. (Most of the entire office is now aware that I have this condition because I've been careful to explain it to people one-on-one whenever I react to a trigger during a conversation.) No, lately what goes on in my mind when I'm approaching someone are thoughts about how they have just as much of a right to whistle, tap their fingers, or whatever they're doing as I have to want their actions to stop. I mean, shouldn't a people be able to eat, breathe, contemplate, or do things in whatever way they're most comfortable too? My coworker understood what I was saying and assured me that people here wouldn't want to knowingly make me uncomfortable if they know they could help it.

Talking with her, I realized that it's not just how I express my discomfort to triggers that makes it effective, it's the mindset of people in general that influences how well the message is received. Not everyone is tolerant to a person's differences especially if they don't understand them. Looking back at some of my previous firms back on the east coast, I'm sure that if I tried to express my discomfort to some of my previous coworkers, I don't think I'd get the same consistent understanding reaction as I do here in the Midwest. I think back to my last boss, who was a bit of a bully - especially when he knew how to "push my buttons" and take advantage of some of my weaknesses at that time. I'm sure if he knew about my condition (I didn't discover I had misophonia until over a year after I was laid off from that firm), he might've taken any opportunity he could to "innocently" create trigger actions just to rattle me.

I've even had experiences out east where I asked complete strangers to stop creating a trigger and it's amazing how intolerant the reactions were compared to out here. (Again, before I knew about misophonia.) For example, I was once waiting for a train on a metro platform and this guy was tapping his ring on the metal bannister by the escalator. The repeated clinking sound of the metal against metal in the echoing tunnel was so annoying, I meekly asked him if he could please stop. He looked at me and said gruffly, "Why?" When I explained the noise was bothering me, he looked away and kept doing it. I wound up walking to the other end of the platform to try to get away from the sound.

This is so different from my experiences with strangers out here in the Midwest. Heck, a couple of months ago I was on a plane headed for a business trip when a woman sat down in the row in front of me wearing perfume so intense, I thought I was going to die. I knew there was no way I was going to be able to breathe that air for hours and not get sick. Although I was sitting in a window seat, I asked the guy sitting in the window seat on the other side of the aisle if he would switch seats with me because I couldn't tolerate the perfume.  I was sure he wouldn't switch seats with me, but he did! He had no reason to do so, other than being a kind person. I don't know if I would've found such an understanding stranger out east...

One day I hope misophonia will be more widely understood throughout mainstream society so that people will become more tolerant to the discomforts of sufferers like me.

One day...

This is just too weird... This morning, computer gremlins struck and decided to mess up my laptop's sound system in such a way that even though my earbuds were plugged into the machine like usual, the sound came through the speakers. I tried to mute the speakers but it muted the earbuds too. The sound controls also looked different than they had been over the past year and a half that I've had the computer. I was so frustrated to not have my favorite misophonia coping tool functioning...

What's weirder is that as I typed the above paragraph, I decided to stop and see if I unmuted the speakers, would the sound also play through the earbuds. When I went to unmute the sound, I noticed that my controls were back to their old look. Not only that, but my earbuds are working again.

I swear... I think my computer is playing a mean April Fool's joke on me. (Given that I'm a geek who spent the previous six years in my old firm doing I/T work, it wouldn't surprise me if I had computer gremlins to annoy me on April Fool's Day!)      %-)