The conference hotel was less than 15 minutes away, but Kelly and I were already late. Registration for the third-annual conference on misophonia began at 8 am on Friday, and then next two days were full of sessions and presentations led by psychologists, audiologists, researchers, and physicians. I dropped Kelly off at the front door and proceeded to park the car in the only remaining space around back.
The Holiday Inn in Carol Stream (Chicagoland) is not your typical convention hotel. It has maybe one modest conference room with a folding wall that can transform it into two even more modestly sized spaces. It’s the kind of hotel that people choose to save a lot of money when visiting the Chicago area. If you drive past on an average Friday morning, this hotel is the last place you’d expect to find nearly 200 people from around the world gathered to speak about a neurological disorder that’s only had a name for the last five or so years.
When I jogged through the front doors, the registration line was more than 30 people long, and the conference room was nearly full. Rather than being impressed with the turnout, the fear I’d been harbouring all morning–we’ll be too late and Kelly won’t get the back row seat she needs–was the only thing I could think about. You see, when the person you live with has misophonia, it’s difficult to be anything other than single-track-minded when you interact with the world. Misophonics live life in survival mode more often than not, and as a spouse, you need to understand and adapt to that fact in order to make your partnership successful.
Kelly and her mom had already grabbed seats in the back corner, as well as my name tag, so I was free from having to stand in line while the first session began.
After the conference formalities were over, audiologist and Ph.D. Chris Spankovich presented an intensely scientific overview called “We Hear with Our Brains.” In stark contrast to the first misophonia conference in Phoenix three years ago, which was a subgroup of an audiology conference and had only nine patients attending, this year’s conference had an audience of some 30% patients and nearly as many family members. My skeptical side feared this conference would be more of a two-day venting session for patients than a conference with actionable information and research. Chris’s presentation, while heavily medical in nature, also made me realize that venting and companionship among those with misophonia and those living with it is absolutely necessary for survival and coping, the reason being because there are very few answers from science that are truly helpful. Most promising, however, was the position he defended that misophonia is not a hearing problem, but a brain problem in how the sufferer’s wiring interprets signals related to certain sound frequencies.
After living with misophonia (via Kelly) for more than seven years, I felt the first real hint of hope in the medical profession finally giving this disorder the recognition it deserves (my initial reactions to that conversation are over on Medium).
Kelly gave a great recap of the kinds of emotions we both experienced during the event on the blog here, so I won’t spend much longer on details of sessions or the people we met. Overall, it was all quite inspiring and empowering to be part of such an intimately shared experience with so many others. However, I can’t say I left the conference with my fears totally alleviated. While some very early tools, tricks and tech exist to help with some aspects of misophonia, medical research is woefully slow in providing actionable answers or hypothesizing a cure. One researcher conducting a multi-wave study won’t have final results for at least another 6 to 8 years, and that just one person.
A lot of the reasons research is delayed is due to lack of funding. Now I’m not a doctor, but if I’m being honest, I have a very powerful feeling that we should be doing more, because there’s so much more to do.
I don’t know where to start, but these conferences are providing at least a sliver of hope.