Hooray! The past whirlwind of back-to-back conferences is almost behind me. I'm sitting in a small club room at the Las Vegas airport waiting to go back to the Midwest and took this as a nice, quiet opportunity to catch up with this blog. Yesterday, two colleagues and I presented a panel session at a conference. I won't say that things are going to calm down for me now that the presentation is over. Now that THAT presentation is done, I hopefully can focus on playing big time catch-up at the office and try to get back into a more regular posting routine here.
Out of all the cities that I've ever presented seminars or attended conferences, Las Vegas is by far my favorite. In fact, I can honestly say that I had very little trigger experiences while at my Vegas conference compared to the nearly constant bombardment I experienced at my Philly conference a couple of years ago. I know some people can take it or leave it when it comes to Vegas but as a lighting designer, it is a truly inspiring and creative city.
The one consistent thing about Vegas that is tough for me, because it is one of my smell triggers, is the prevalence of smoking in casinos. Years ago I heard that there had been an attempt to have a smoke-free casino but from what I understand, it was a total flop. So, I try to minimize my exposure to cigarette smoke by staying at one of the few hotels on the strip that doesn't have a casino called TheHotel. (Yes, that is it's name.) Out of all the hotels I've stayed at while in Vegas (which is a lot), TheHotel is, in my opinion, is the best hotel for someone like me with misophonia. It's a fairly quiet hotel (no noises from the slot machines since there is no casino in the hotel), the rooms are all suites (so the bedroom is separated from the public corridor by the outside door and the door between the living room and the bedroom), the architectural finishes are pretty dark and soothing, and the staff pretty much makes sure that your stay is very relaxing. I also try to get what's called the "V" style suite, which is at the ends of the corridors, so since my room was next to the stairwell, I only had one neighboring guestroom. Didn't hear a sound! I did have to switch rooms once when I first arrived because they put me on a smoking floor but once that issue was resolved, I had a very relaxing stay there.
Outside of the conference, I don't go to Vegas to gamble. If I want to lose money, I'd rather spend a couple of hundred dollars to for a relaxing day at a spa instead of losing it all in 5-10 minutes at a gaming table. For me, the spa is a place where I can truly put the stresses of work and city life behind me and bathe myself in relaxing sensory stimulation: The smell of lavender or other soothing scents, the sounds of harps and other lyrical instruments, the sensual fabrics and other luxurious tactile sensations, the calming dim lighting and even the refreshing drinks of cucumber water or, in this one spa I visited a couple of days ago, a pineapple/cranberry drink. Typically, I don't experience misophonia triggers when I'm in the spa because of how quiet the rooms are, except in some lounge areas that have water cascading down the walls - but even that to me is soothing. Kind of like the sounds of babbling brooks or waterfalls when I would hike back east. I did have an interesting trigger experience a couple of days ago while at the spa...
I just finished a manicure/pedicure (so I'd look my best for yesterday's presentation) and knowing that I'm notorious for messing up my nails shortly after having them done, I decided to go back to one of the lounges to relax for about an hour while they dry more fully. I was casually talking to one of the attendants when out of nowhere, another attendant walked behind me and at right when she was directly behind me, she started whistling a tune. She whistled it less than a foot or two from my ear so instinctively, I immediately put my fingers in my ears and the attendant with whom I was talking looked at me kind of funny. I explained to her about my misophonia and how whistling is one of my worst triggers. The attendant said to me that there's another attendant in the spa who has the same difficulty with whistling and other sounds. She even said that her significant other also has issues with some sounds. Since I had my purse on me, I was able to pull out a couple of "business" cards I put together for this website. I figured if I could help those two people, an perhaps be able to inform others about misophonia, it makes this website and blog all the more worthwhile to me.
Well, as I predicted a couple of posts ago, I had a feeling that trying to post around my conference travels was going to be tough. It wound up being more hectic than I thought, especially with some complications
during my travels back west. Let's just say that what should've been a pretty straightforward trip (that should've taken around six or seven hours tops) took me nearly seventeen and on top of that, when I finally did get back to the Midwest, it was snowing... In May! I haven't experienced May snow since I was a kid living in upstate New York nearly three decades ago!
Anyway... I won't go into the travel portion because, outside of the fact that the plane that was supposed to take me from my layover stop to my end destination was over three hours late arriving to the departure airport to take me on my last leg, travel is travel and I can't say much was different than the experiences I described in my 4/30/13 post
. What I do want to share in today's entry is a bit of what my trip home to be with my folks was like. (There is a lot to talk about - too much to try and relay in one post alone.) I'll give a little snippet here now, mainly because I feel badly for not having posted in a while. (Let's just say I've been completely slammed at work trying to put out fires and meet deadlines before heading off to speak at another conference next week.)
One small thing I noticed about my trip home was that I was found myself bombarded by triggers much more than I've felt before. I pretty much left my earplugs in the entire time I was at home. My folks were very understanding about it and at times I tried to only wear one, but in the end found that even leaving one ear exposed - especially during meal times - felt very unbearable to me. I've always known that eating/drinking triggers are very bad for me at the dining room table, but I was very surprised to find that I could hear my aunt drink a glass of what I can only assume was orange juice (one of her favorite morning beverages) in another room. I'm not kidding. I heard every swallow (which actually is a double swallow sound) while sitting in the living room over 25' away from the enclosed kitchen. There's a wall between the two rooms, although the kitchen has openings on both of the short ends. I didn't see her, so it's not like I visually anticipated her drinking the juice, yet I could hear her swallowing the entire glass. I couldn't believe it myself!
Putting the eating/drinking triggers aside, I did have several major conversations with my folks about misophonia, not just about my own experiences but in general as well. My uncle is a therapist so he and I spent a lot of time delving into some deep discussions about what it's like, how it's affected me, and I even pulled some medical/psychological research articles off the web so he could read write-ups by fellow professionals, instead of just hearing about my own "layperson" accounts. There were times that he really pushed me with my thoughts, sometimes to the point of frustration on my part, but afterwards I'm glad he did. He really made me think how to verbalize my experiences in different ways and opened myself to other ideas I hadn't considered before. (I know I'm being vague here but I really want to address the specifics in subsequent posts because we really went in-depth into certain topics.)
One thing I'd like to share here is that this was the first opportunity that I was able to share with my folks the doctor's printed report from the Mayo Clinic. I really wanted to know my uncle's professional opinion about what he wrote because my past discussions with him has only been about my interpretation of the report. What I found interesting is that he said the report was very well written. He said it was clear, concise, and that the doctor said I described my condition very intelligently. He didn't think that the doctor was overly focused about my mother's suicide as much as my interpretation of the report. What can I say? It could be that my past experiences with how people react when they found out how she died made me read more into the doctor's mentioning it twice in the report than I should have. Perhaps after being told to prepare to be there for 5-6 days while a patient, I was disappointed that my visit took less time than the 3.5 hour it took me to drive there and that they didn't do any brain scans or other tests beyond simple manual resistance and motor skills tests. I hope my earlier posts didn't come across as dismissive. I certainly don't want to dissuade anyone else from going there. I figure the more people that go to Mayo Clinic for help, the more they'll realize that there is a need FOR help, and perhaps our plight will inspire the doctors there to investigate it more. Maybe someone else with misophonia will have better luck with them than I did (especially if that person goes to them without the same kind of tragedies I experienced earlier in life.) If there are any readers out there who also went to the Mayo Clinic to seek help, I'd love to hear how your experiences there compared to mine.
Anyway, my uncle did comment about the doctor's recommendation that I see a cognitive therapist (which I seem to recall was in their Mental Health Group). My uncle had a book by the psychiatrist who developed the cognitive therapeudic approach, Aaron Beck, and since I didn't get a chance to read it while at home, I plan to see if I can borrow it from a library to learn more about what it's all about. If it may help with my misophonia, I'm certainly open to explore different options. The one thing my uncle cautioned me is that if I seek help from a cognitive therapist, they will focus on the psychological aspect of what I'm going through, and not really consider the physiological side. I do still believe that my misophonia is more physical than psychological, so I may hold off pursuing the cognitive therapist right now - at least until I have a chance to read the book my uncle showed me so I can understand more about the therapy.
On a side note, I do want to follow-up my 4/10/13 post about the webinar by the behavioral scientist. I watched one of his sessions a few days before I started my travels and he sent me a link to the recording on YouTube while I was away. If you're interested, the YouTube recording is here.
So, once I rested up from my long day of traveling, I hit the conference full speed ahead. Unfortunately, so did my misophonia triggers. (Not much I didn't expect from being in such a large public forum though.)
The morning started with my heading down to Starbucks to grab an iced hazelnut macchiatto (something I've started to enjoy in recent weeks). I left early enough to beat the huge rush, but just barely... After waiting in line for about 5 minutes, I noticed the woman behind me sniffing (practically in my ear) every several seconds. This was one of my frequent triggers while riding the metro down in DC in the winter and early spring months. Back then, I would scramble to put my earplugs in as soon as I heard a sniffle, totally fighting the urge to shove a travel pack of Kleenex in their face to get them to stop. It never was just one sniff and for whatever reason, no one ever blew their nose. They just spent the entire metro ride sniffling. I don't know what made me offer the woman a tissue this time but maybe I've gotten to a point where I want to stop keeping my discomfort to myself. I turned to her and politely asked if she'd like a tissue, to which she responded, "No thanks. It's just allergies." I angrily thought to myself, "I don't care what's causing it!" and then said to her how I've got a medical condition that her sniffling in my ear was aggrevating. Funny thing... She actually stopped for the rest of the time we were in the queue.
From there, I picked up my conference badge at the speaker ready room and headed over to my first class. On the way, there was a maintenance man pushing a plastic dumpster down the hall while whistling. I immediately tried to put my fingers in my ears but since I was still holding the large iced macchiato, I must have looked riddiculous walking with my fingers in my ears, still holding the iced drink next to my left ear. I realized then that it was probably going to be a LONG day of trigger bombardment. Even though I arrived at class late (they switched rooms to the other side of the building), I lucked out and there was still a completely empty table right at the front of the room by the projection screen. (My ideal place to sit in these seminars.) Unfortunately, the guy sitting at the table directly behind me started sniffling so back in went the earplugs. That's the great thing about being at the front of the room. Even if the speakers weren't using microphones (in most of my classes they were), they were loud enough that I could leave in my earplugs and still hear the presentation while blocking out any background trigger noises.
I pretty much left in the earplugs for the majority of the conference. Only a couple of times did I take them out, usually when I was in a one-to-one conversation with a colleague. I was surprised to find out that even with them in place, I needed to avoid going into the speaker ready room around lunchtime. The conference organizers provided speakers coffee, munchies, and even lunch during the event but lunchtime was really tough because EVERYONE would grab a soda and the PSSSHHHHTTT-CLICK sound was constantly hitting me from all directions every few minutes. Not a good time to work on my own presentation (which, after all was said and done, seemed to be very well received by the people who attended my program.)
The one other thing I'll share about my misophonia triggers while at the conference (since much of that week was the same stuff, just a different day) is that, like most other conferences I've attended around the country over the years, the convention center likes to use the type of chairs in their "auditorium style" setup that link the chair frames across the entire row. (See left image below.) I'm sure they do it to keep the seating organized but for someone like me with tactile triggers, it's a real pain in the butt because someone could be kicking/knocking against the chair at the end of my row but because all the metal chair frames are connected, the vibrations quickly travel down to my chair. One of the first things I try to do when entering a seminar room is to find the end seat of the front row and detach it from the rest of the linked chairs. (Right image below.) At least then, I only have to deal with the people sitting directly behind me.
Usually, if I get there early enough and the seminar hasn't started yet, I'd even politely ask the people behind me to not rest their feet or bags on the back of my chair because I'm very sensitive to the vibrations. Believe it or not, the people to whom I've made that request directly were pretty understanding and I didn't have a problem during the presentation. The problem usually happens when I arrive after the presentation started and I don't have that one-to-one opportunity, and wind up either sharply turning around while giving the person a dirty look or putting my own bag on the back of my chair to get them to stop. I prefer having the direct conversation though. I usally get better results. :-)
Next post: After the conference - My visit home
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.
Little Mr. Innocent playing "cutesy"
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.