Despite all the frustrations of having to deal with my misophonia day after day, life outside of triggers still goes on. I'm not happy about not having posted for a while but let's just say it's been a rough week physically (got sick) and mentally (mainly work-related issues). I won't go into detail about my work frustrations. It's just another situation where I'm being set up to fail at my firm by having to do the work of three people with no possibility of ever getting help. I'll stop right there though, for fear of venting on issues that don't relate to misophonia. All I can say is thank goodness the week is over, especially since I got a new cell phone and haven't set up my work email on it yet. Hopefully that should allow me a tiny possibility to not think about the office this weekend. (It's a long shot, but one can always hope...) My grad school's studio (Photo from http://journal.barrocal.pt/)
Misophonia-wise, it was a pretty status-quo week for me other than this evening being our office's holiday party for our clients. A couple of people at the festivities who knew about my misophonia asked me if the noise of the party bothered me. I think they were surprised when I said that the sound of so many people talking was more of a background "white noise" to me, similar to the continuous soft roar of a HVAC (heating, ventilation, air-conditioning) system. Even when I tried to demonstrate to someone the type of sound that does bother me by drumming my fingernails on a table, the sound of the party drowned out the "tack-tack-tacking" noise. I could barely hear it.
Thinking about the buzz of people talking at the party drowning out potential triggers just made me realize that perhaps one of the reasons why I might not have noticed as many triggers during my late grad school years is because the studio space where everyone worked was always busy with students 24/7. The open space was always filled with energy, and the dull drone of noise by more than a hundred students working, talking, scribbling and creating in the same four-story open space filled the air... There was no carpeting or soft materials to dampen the sound. In fact, it wouldn't surprise me if the architectural design of the facility enhanced sound transmission throughout the space. It was only when I was away from that busy activity and in smaller/quieter spaces, with only a couple of people around me, that I noticed trigger sounds bothering me.
I'm laughing to myself as I type this because I haven't thought about the energy of that studio space in a very long time. (I graduated from there almost twenty years ago!) Oh well... At least thinking about that fun time in my life keeps me from thinking about work crap (to put it mildly)... :-)
One of the things that my aunt would say, whenever we'd have discussions about my misophonia, is how creative I am in so many different media: music, sculpture, writing... I know that part of it is because she's trying to be very supportive and encouraging of who I am and how much creative work I've done throughout my life. The more I learn about misophonia, the more I wonder how much of my creative abilities have been supplemented by my hyper-sensitive senses of hearing, touch, sight, and even a bit of smell and taste. (I've been very creative in the kitchen of late.) I don't think it's such a far-fetched idea, especially considering what I recently discovered while doing some more informal misophonia research.I belong to a couple of misophonia discussion groups and every now and then, someone will pose a question that inspires me to try to look for an answer. So when a person asked if anyone knew about a recent National Geographic report on misophonia, I'll admit, the thought of such a report piqued my interest to know what the report would say. Of course, I tried googling "National Geographic report on misophonia" but didn't find the report. I even went to the National Geographic channel website but searches of "misophonia" and "sound sensitivity" came back with no results. What I did find from the initial Google search was an artist who did an album cover for the Danish heavy metal band called Misophonia on a website called deviantArt. I'll admit, the artwork really captured the emotion of what it sometimes feels like to be exposed to triggers - the rage created by a little needle jabbing at the ear. Although the image is unsettling, it is powerful and familiar at the same time.
I looked at some other images on the site, not all of which focused on the subject matter of misophonia. One other that caught my attention was a comic strip (page) illustrating a student with misophonia being bombarded by triggers during class. Even though it was a much simpler visual work than the album cover, in the back of my mind I could hear the various triggers conveyed in the various frames.
Between the visual artistry of these artists and the musician Paul Tabachneck, whose song "Misophone" I mentioned in the "Video and Audio Clips" page in the "Other Resources" section of this website, and my own experiences, I started to think about how many other artistic people are out there who might also suffer from misophonia...
Who knows, perhaps the creative Van Gogh cut off his ear to try to lessen aural misophonia triggers with which he may have been bombarded. Okay, that one may be a stretch, but it is and interesting thought to consider... I kinda like that possibility over what has been noted as the real account of how Van Gogh lost his ear. I can't tell you how many times I've lamented my excellent hearing and wished I could give some of my aural sensitivity to someone needy with hearing difficulties. (To warp a quote by a famous comedian, "Take my ear... PLEASE!") :-)
Happy Thanksgiving everyone. Yes, you read that heading correctly. This was probably the most peaceful Thanksgiving I've had since I was a little kid. No triggers created by anxious travelers fidgeting in crowded airports stressed by how insane traveling during Thanksgiving week. No slurping, swallowing, or clanking of silverware on chinaware at a Thanksgiving table... No chairs knocking into mine nor being squished in the middle of the table with neighboring appendages and dogs rubbing against me. I didn't even have to wear my earplugs at all today. Of course, it was also the first time in over 40+ years that I've spent Thanksgiving by myself; and luckily for me, my cockatiel doesn't make any trigger noises when he eats. It was so pleasant relaxing in a barca-lounger by my "butane-lighter" of a fireplace, the scent of autumn spice candles burning in the background.
I'm sure it wasn't easy for my family. Yesterday when I called home to speak with my aunt, she said that this is her favorite holiday of the year. I'm sure it's because it's usually the one holiday where our family is all together - which probably hits home even more so this year, since it's the first time that Thanksgiving and Hanukah are at the same time (which makes my not coming home this year even more of a double-whammy for my family).
Even though I told her and my uncle my reasons for not coming home this year - mainly I can't stand traveling during the days surrounding Thanksgiving but also, now that I'm understanding my misophonia more (something I only learned about last year), I knew I didn't want to deliberately put myself in the situation of being bombarded by triggers with no means of escape. I actually said to my aunt yesterday that I am miserable during Thanksgiving and was surprised when she asked, "Why?" I guess she was so focused on how much it means to her for the family to all be together that she didn't realize how torturous Thanksgiving gatherings are for me. My misophonia is still a relatively new concept for my family to understand; and I did such an effective job of bottling up my frustrations during past Thanksgiving gatherings, there was no way she (or anyone else) could truly comprehend the extent that I suffered during Thanksgiving. I even told her that it's such a stressful time for me that it usually takes me several weeks to recover from the stress of Thanksgiving holiday; but not this year.
In all honesty, as much as my not being home right now must be tough for my family, I do hope they
understand that I did it for my own peace-of-mind, something of which I find I have less and less as I grow older and more sensitive to triggers. Hopefully, this holiday season will be the start of my taking better care of myself, especially as I learn more about misophonia and how it affects my life.
May your holidays be peaceful and trigger-free!
Several weeks ago a friend suggested that I contact his doctors to see if they'd be willing to try treating my misophonia with neurofeedback (NFB, also known as bio-neurofeedback). He had been using NFB to help with his dyslexia and ADHD and he spoke very highly of his experiences there. I figured it was the first time I had a specific connection to a local facility that does NFB, so I finally gave them a call.
The woman with whom I spoke is a social worker, but her colleague is a psychologist trained to do the NFB. We talked about my experiences with misophonia, a condition with which they were not familiar, and left off that my next step would be to meet with them in person for a preliminary consultation. She added that unless I had Blue Cross/Blue Shield insurance, any NFB treatments would likely not be covered. I knew this to be true because last year, when I first learned I had misophonia, I checked my United Healthcare coverage limitations and sure enough, NFB was not covered. I contacted United Healthcare after making that discovery since, at the time, NFB was the only treatment that I read had some positive results in helping people with misophonia. The customer service person said that I could try to apply ahead of time to be considered for an exception. I hadn't pursued it though, thinking I'd try pursuing other avenues first, but now I think I'm going to try it.
I'll probably wait until the new year to set up an initial appointment though. If I'm going to be paying out of pocket, I'd rather start fresh in the new year so that I can meet my deductible more quickly - at which time I'd be fully covered for treatments for the remainder of the year. It doesn't make sense to start now, when there are only two months left in the year.
Boy... Time flies during this time of the year. I can't believe we're beyond the November halfway point and Thanksgiving is just around the corner next week. This will certainly be an interesting holiday for me because it will be the first time ever that I'm staying put and just taking a relaxing holiday instead of dealing with the craziness of holiday travel and intense festivities around holiday meals.
One thing I've noticed about myself is that ever since I learned about misophonia last year, I am less hesitant to express my discomfort with, what I now know are, misophonia triggers. For decades I've bitten my tongue in public situations where I'm bothered by triggers, mainly because I had no idea that they were triggers and what I was experiencing was due to a medical condition. I really find it relieving to know that during the times when I do express my discomfort, more often than not people are not only sympathetic to my situation, but they are many times intrigued about it and once in a while, they think of someone they know who might even have it too. Just in the past couple of weeks, I had two such experiences...
I mentioned one experience that happened in my 11/12/13 post
; but I also had a situation recently when shopping for winter clothes at a department store where one of the salespeople not helping anyone was walking around the area whistling. I politely asked him to stop because I, "have a medical condition where whistling hurts my ears." He stopped but then a half hour later, while I was paying for my items, he started walking around the register area whistling again. I politely asked him to stop again, which he did and he was nice to say that he forgot. As he apologized, another salesperson standing by the register overheard my conversation with him and asked me more about my condition. I explained to her not only the trouble I have with sound triggers but also with visual and tactile triggers too. (The tactile triggers are especially an issue when I'm trying on new clothes.) The more I told the woman about my misophonia, the wider her eyes became. She said that it sounded like something with which her niece struggles. The more she told me about some of the things her niece can't stand, as well as some of the niece's reactions to certain sounds and visuals, the more it sounded to me that her niece could be suffering from misophonia too. By the time I was done, there were four or five people listening to our conversation, and they all appeared intrigued.
Luckily, I always keep business-like cards with the SenseHaven.com address on it just for such situations. Since it seemed like information about misowould be very useful, not only to the salesperson but also to the niece and possibly her parents or other people in her life, I gave the woman several cards and showed a few of the pages on my cell phone (so that she'd know where to find the articles and other resources on the site).
As much as it's difficult to verbalize to a triggerer when something they're doing bothers me, I feel that as long as I can talk to them politely when expressing my discomfort, they are much more receptive to my request. Ultimately, regardless of whether they know someone in a similar situation to me or not, at least that's one more person in the general public who knows about misophonia.
Today I had an interesting experience with one of my coworkers, who was visiting from one of our other office locations. I needed to coordinate with him on a project; so when I arrived in the office this morning, I went to the desk where he usually sits to let him know I was ready to meet whenever he was ready. He and one of my other teammates on the project were in the middle of a discussion but I listened in because some of the information was useful for me too. At one point, he started to open and close the cap to the pen he was holding, which made an annoying clicking sound. I tried to ignore it but he kept opening and closing it over and over and over.
Since he already knew I was ready, I decided to walk away from the trigger rather than to ask him to stop clicking his pen. He made a comment about my walking away, but I just calmly (not angrily) replied that the noise of the pen clicking was bothering me and I didn't want to interrupt his conversation. That he should just come down to my desk whenever he was ready. He came down about 5-10 minutes later and we had our discussion without any further comment about what happened upstairs.
After lunch, we had a team meeting conference call with our outside consultants. I came a bit late (they changed the room at the last minute) and sat down next to my coworker from this morning, so that the table was balanced with two people on each side. About ten minutes into the conference call, he started popping off and on the pen cap again, but this time I had to stay where I was. I tried putting in my earplugs but I could still hear the snapping of the cap over and over. Since he was actively leading the meeting, I knew there was no way for me to quietly ask him to stop, so I started writing a note to ask the question. I realized that I didn't phrase what I wrote well, so I began to turn the page to try to write it out again. Before I could do it though, he looks at me and puts his closed pen on top of my notebook. Somehow, he realized that the noise was distracting me again. I smiled and put the pushbutton top pen I was using on his notebook in the open position so he'd have something with which to write, but in the back of my mind I hoped he wouldn't start clicking that too. (Luckily, he didn't. He used a sharpie he brought instead.)
When the meeting was over, I asked if he saw the note I started to write, and he said yes, he had caught a glimpse of it; however, he said at the same time he also realized he was snapping his pen as he was doing it. He was very understanding about the whole thing. I really believe that because I asked him so nicely in the morning, instead of being angry about it, he was very respectful and considerate of my sensitivity. It all goes back to my comment about how the message is delivered
when communicating any discomfort to someone else.
Before I write about what I originally planned to post, I have to tell you something funny that just happened to me at the office...
I'm here working late to make up for being out of the office yesterday and I kept hearing a tapping sound coming from the other side of my partition. Very few people are still here but I walked over to see if someone was sitting in our reception waiting area drumming his fingers out of boredom. I took a quick glance and not seeing anyone in the darkness (the area was just lit by the glow from the street lights outside the storefront windows), I went back to my desk. I figured it must be some natural creaking in the mechanical system. After a while, the quick, repeated tapping sound became extremely annoying so I went back to look again and saw that there was indeed water dripping from above my coworker's area. I assumed that it was a sprinkler pipe leaking, since all the MEP (mechanical, electrical, and plumbing) systems are exposed; so, I went to the head of our engineering department, figuring he'd want to know. When we both went back to take a closer look, I realized that the water was coming from ABOVE the sprinkler pipes, in between the cracks of the wooden slats of the exposed ceiling.
We went upstairs to see where it might be coming from when lo and behold, we discovered that someone overwatered the plant in that conference area and the plastic tray must have had a hole in it. The water was dribbling down the wooden block on which the plant rested and puddled on the floor where it then seeped through the cracks down to the mezzanine level. What's even funnier is that today our office revealed our "secret identities" for our client holiday party (the theme for which is superheroes). Somehow they made me "Madame Vamp." Given this latest incident, I think my character should have had something to do with having super-hearing or super-senses... LOL! (Don't ask me how our marketing department came up with my special abilities or who my arch enemy is... I just posed for the picture!)
Putting my super-hearing aside, the reason why I haven't posted in a couple of days is because I decided to surprise my family back in NY by coming home this past weekend. I decided this year that I didn't want to go home for Thanksgiving, for two huge reasons: 1) Traveling home from the Midwest is a pain in the neck even during non-peak travel periods (let alone traveling during Thanksgiving week which is absolute hell), and 2) I dread coming home for the holidays because I'm always uncomfortable during Thanksgiving family gatherings. Ever since I learned I had misophonia last year, I now know why I've been so miserable. Of course, eating triggers are at their highest during Thanksgiving feasts, but there's also the fact that I hate being smushed in the middle of the table with adjacent chairs knocking into mine, my brother-in-law and nephew constantly whistle around the house (and since it's their house, I don't feel comfortable asking them to stop), the sound of clinking
Today I presented my first speech to my new Toastmaster's club - a speech where I not only introduced myself and described misophonia, but also related my misophonia experiences to their own environments. From the feedback I received after my presentation, it was clear that they were intrigued by the condition and were very appreciative that I shared my experiences with them. So many people commented that they never knew such a condition existed, and a few people even said that they became more aware of their actions, and making more of an effort to sit still during my presentation, the more I described my discomforts with triggers .
One comment in particular that came up frequently was how I was able to convey what it's like to them in a manner that they (as non-sufferers) were able to truly relate to what I experience every day. Right from the start, I held a snack-sized potato chip bag and kept crinkling it as I began my speech. They were able to experience how difficult it was to hear what I was saying through the distraction of the crinkling bag noise. I used several other props to demonstrate how distracting certain sounds can be when trying to focus on a task, such as when I kept clicking a ball point pen, opened a soda can right in front of them, and I even clinked a ceramic mug with a metal teaspoon during my speech to emphasize some of my points.
Although I mentioned the "nails on a chalkboard" analogy, since we were in a room that only had dry-wipe boards and a flat-panel screen, I also used some more generic analogies that were more relate-able in a modern day setting such as when a person is trying to read a book or focus on some other task while a mosquito keeps dive-bombing past their ears. First a mosquito, then a horsefly, then a bee, back to a mosquito, then a wasp... All the while the insects are bothering their ears, yet completely avoiding other people nearby. The insects are too small and fast to swat at, so they keep distracting them from what they were doing. If enough insects bombarded them, they would become so agitated and frustrated that their gut instinct would be to try to run away from the persistent bugs. (Several people said they could totally imagine what that would feel like.)
That was only one of several examples I used, and once I could see that they truly could understand what it is like to constantly have to deal with misophonia triggers, I connected the sentiments with what we do in our environments unintentionally affecting other people's environments - particularly in open office situations. I mentioned how partitions are getting lower to facilitate communication between employees, but that also makes it more noticeable when people use their speakerphones at their desks. I also commented that whistling while walking around the office can be just as distracting as someone playing their music out loud using speakers. If people are supposed to wear headphones to listen to music on public transportation (busses, subways, etc.) so as not to disturb others around them, then isn't whistling around the office just as distracting to a person who might be on a client call or trying to focus on a deadline? (Someone especially liked my comment about people not liking to have "ear worms" forced upon them.) I also pointed out how our workloads are so heavy that more and more people wind up eating at their desk, which can also be distracting to people around them who are trying to work. I suggested that they take an extra minute or two to go have lunch at a cafeteria or on an outside bench away from their desk, since research suggests that it's healthier to not eat at your desk anyway.
In the end, as rusty as I was giving a Toastmaster's speech (it's been over seven years since I was last a member), all of the feedback I received today showed that my speech helped them understand - and even sympathize - with my misophonia. Although my presentation was videotaped, I think I'm going to hold off posting it here. This may have been the first, but it will not be the last time I speak publicly about my misophonia. Once I feel I've got my message more polished, I will be happy to share it with you all.
mandatory staff outing
(that I didn't attend). Evidently someone won a new project for the company and decided to let the whole office know by banging on the gong. Unfortunately, the news didn't stay internal for long.
Rumor has it that when my coworkers came back Friday night, several people hung out in the office way past 11 p.m. to play pool (we have a pool table in the office) and enjoy the evening. From what I understand, someone banged the gong that night, which set off the (silent) alarm. The police called one of the principals to come into the office to see what happened. Well, even though the office is open right now, the alarm must still be activated because when someone hit the gong a little while ago, the police again called the office to find out what was going on.
All I can say is it's probably a good thing people now know that hitting the gong will alert the police. I think I'd go nuts if people were hitting the gong all day to celebrate project wins.
... Actually, what I should be saying to myself is, "You snooze, you lose."
I like to pride myself in being pretty punctual. (For some reason, my sense of time is much better than the other women in my family.) Yesterday however, I wound up being a little late in going to a different Toastmaster's meeting - mainly because my car's GPS took me to the town's city hall instead of the public library where I needed to go. Unfortunately, that little delay meant that I couldn't scope out an ideal place to sit at the meeting and I wound up having to sit in the worst possible place for me... in the center of a "U" table arrangement at the farthest point possible from the speakers presenting at the front of the room. It was very frustrating because I couldn't focus on the primary speaker, whose presentation was the whole reason why I went to that meeting.
I have pretty wide peripheral vision to begin with, but being at the middle of the "U" meant that everyone sitting at one of the side legs of the "U" was in my line of sight. My view was flooded with triggers such as people drumming their fingers on the tables, twiddling thumbs on top of clasped hands, rubbing hands that almost had an "evil scientist" look, feet tapping and bouncing underneath the tables, one person clicking his ball-point pen over and over and over... Worst of all was that everyone seemed to have a cup of coffee or soda at their place and there wasn't a single moment where the motion of someone slowly bringing their cup to their lips and back down didn't distract me. That last trigger has always been baffling to me, but for some reason just the slow motion of a hand (with or without a cup/bottle/can) moving up and down in my peripheral vision always annoyed me. On top of those triggers, there was a late comer to the meeting who sat directly to my right and spent the entire time texting on her cell phone.
Although the person whose presentation I came to see spoke at the beginning of the meeting, the entire meeting was scheduled to last four hours. I knew there was no way for me to be able to sit through three more hours of constant triggers. It's not like I could just look down at the tabletop and listen to the speaker. I was in the direct line of sight of the speakers and it could look like I was falling asleep. (Eye contact is very important when speaking to an audience Luckily, one person at the meeting knew of my misophonia, so I told him during the break that the triggers were overwhelming me and I needed to leave. He offered to see if people would switch seats with me, but I really felt uncomfortable asking people to do that, especially when it was my first time visiting the group and people didn't know me.
It was probably just as well that I left... This coming Thursday I'm going to be presenting my first speech to my new Toastmaster's club
and I'm going to use that opportunity to tell them about my misophonia. It's been about seven years since I presented a speech at a Toastmasters meeting so I'm a bit rusty. I needed the time this weekend to pull my thoughts together and figure out what I'm going to say. Of course, I'll post what happens after my Thursday presentation.