Although mental illness is generally a gestalt of varying concerns and the human psyche has many factors contributing towards its health or detriment, the practicing model for decades has been to reduce it to one or two problems and treating them according to formula. While I was a practicing psychotherapist, and while I was in school to become one, the diagnosis was and continues to be the reigning model to direct treatment of mental illness. Diagnoses are problematic for many reasons, and perhaps there’s a whole other blog needing to explore this fascination with label everything refusing to fit into what we consider “normal”. My diagnoses are as follows: Posttraumatic Stress Disorder, Major Depressive Disorder: Chronic, Generalized Anxiety Disorder, Obsessive Compulsive Disorder, I have a foot and ankle on the autism spectrum, and I have a rare form of hyperacusis called misophonia.
This is a long list of ailments, yeah? The point is, not one of them really tells my story. Mental health tries to reduce what is ailing the patient to one or two things, and this is a result of what we call the “medical model”. The medical model seeks to reduce a patients concerns (I refuse to say symptoms, as this too is part of the medical model) to one or two diagnoses. It makes it easy to say, “Oh, you have an anxiety disorder. Take 100mg of Zoloft at night and then you’ll be able to wash the dishes again instead of being stuck in your bed with depression.” But the dishes still don’t get washed, and although one may feel a relief for a time, the depression, anxiety, mania, and general psychic pain return, unabated, often stronger than before. But before the anti-med people get on their high horse, Zoloft, or any other medication, is not the problem. The problem lay in understanding our mental health conditions to be the result of one thing. We want to pinpoint mental illness to this very specific thing we know how to treat, take the pill and be rid of it.
If we take a look back to the laundry list of diagnoses I carry with me, we can see the contradiction taking place before our eyes. I’ve been seeing the same psychiatrist for twelve years. This is uncanny in today’s world of HMOs, young residents, and unstable psychiatric practices (due to insurance policies, I’m sure). My diagnosis has changed several times and we’ve finally locked in on some words best describing what I go through so the Medicare will pay for it. But these words mean nothing. I realize this summer my mental health isn’t just depression, it isn’t just PTSD or OCD, it’s a lot of different things rolling into one big ball of hot garbage.
The realization came when my psychiatrist referred me to a therapist in his office who specializes in children who have autism. We spoke about some of the things my wife and I noticed as triggers, some of the behaviors resulting from those triggers, and everyday stressors affecting me. What we were told didn’t quite surprise us, but it may surprise you, faithful reader. I fall somewhere on the very mild side of the autism spectrum. Furthermore, my auditory processing disorder was having a greater effect on my mind and behavior than I’d ever previously understood. While the DSM-V lists autism as a spectrum disorder, new research shows this to be wrong. At this point in time, autism is understood to have up to 50 distinct manifestations, some of them severe and some of them barely noticeable. Although most people on the spectrum struggle greatly with social skills as well, what puts one of my feet firmly on this spectrum is something called sensory integration.
Sensory integration is the ability of the brain to filter out one sense from another. For example, if someone were to run their nails over a chalkboard, many of you would have an adverse reaction: your body would tighten, your eyes would close to squinted slits, and your face would contort to a brief grimace. Now picture this happening when cold water hits your hands: it doesn’t feel cold, it burns with pain. Let’s take the scenario and apply it to the sense of hearing. When a neuro-typical person hears a dog bark across the street it makes no difference in their brain. The brain may register it, but not enough for the Mind to notice, let alone react. When I hear a dog bark across the street I may as well be ramming a nail into my ear. It’s physically painful and I feel like I’m bursting out of my skin. This is the parasympathetic system, or the system supposed to help regulate stress, in action. The problem is, for someone with sensory integration issues, the parasympathetic system is always turned on. Same thing with PTSD, so there you go. I got a double whammy.
Seeing someone who was a specialist outside of the box we’d be working in for 12 years has been life-giving. She affirmed it wasn’t just PTSD causing all of my turmoil: It is a combination of things that lead to my meltdowns, my suicidality, and my general suffering in life. Looking at the concerns from the lens of autism we were able to discover new concerns which are treatable. (Unlike this pesky PTSD, which doesn’t seem to want to go away, ever.) The first thing we decided to tackle was my auditory processing disorder.
We made an appointment with an amazing audiologist and after going through a thorough assessment we had tangible proof my brain has always functioned differently than others, even if I didn’t have the PTSD. Hyperacusis, in laypersons terms, means I hear way more than most people. Every little sound is amplified, and I also have trouble distinguishing sounds when they’re surrounded by other sonic intrusions. Moreover, I have a rare form of hyperacusis called misophonia, which basically means it’s way worse. So hyperacusis is found in something like 10% of the population (don’t quote me on that), and misophonia happens in 3% of people with hyperacusis (quote me on that, though, it’s true). So I have the rarest form of an already rare condition. It has made life miserable.
Washing dishes? Can’t do it. Clanging plates might as well be a hammer to the head. Loud cities? Get the fuck out of there with that shit, I’ll go crazy if I’m there for more than 12 hours. Crazy, seemingly insignificant things trigger it: dogs barking (ours are pretty good, so that’s nice), garbage trucks outside, hitting a speed bump faster than expected, a book dropping three rooms away, and when it gets really bad, late at night, even a pin drop. Have you ever talked to me in a bar or after a show? I can’t hear a damn word your saying, I’m just nodding and smiling because you’re probably saying something awesome. It’s misery, and the weird thing is, I thought everyone’s ears were like this. I had no idea what it was doing to me and how impactful it was towards my cluster of mental health knots. I cried during the assessment with the audiologist when I realized I wasn’t going crazy, the way I hear is normal for someone like me, and it can be treated.
Audio integration therapy (AIT) is a treatment process to strengthen the ear muscles and bring the processing (nerves) back to balance with one another. I was warned since my case was so severe, a complete recovery was not likely possible. Whatever, I just want a little relief. The treatment was two weeks long, one hour a day for five days straight with a weekend in between. I woke up early in the morning and my wife drove me to the office, where I would be led to a back room with a table to the side, a rocking chair, and what looked like some equipment I’d see at one of the studios I record in. They gave me a set of headphones as I sat in the comfy chair and the treatment began.
This weird thing is what caused all my pain…
I attempted to sit peacefully my first day, but after a few seconds, I realized it wasn’t possible. The music coming through the headphones was awful in content (nursery rhymes for the kids that come in, awful Muzak quality versions of rock, jazz, funk, pop-country, and reggae), which is easy to describe. I mean, for a musician with fairly nuanced tastes it’s a bit difficult to sit through the music alone. It’s difficult to describe the other part of what’s going on when I put the headphones on my ears. I’ll do my best: imagine putting on shitty music, say Nickelback, on your headphones, the taking a tone knob and rapidly turning up the treble at the loudest moments of the song, like where the snare drum hits, or a hi-hat barks, giving it a harsh, tinny sound. Alternate it with doing the same thing to the bass end of the tone. I know I’m speaking musician language here, and I hope you can get the gist. And while one of you dear readers may not have had an issue with it, it would have been a minor annoyance you barely paid attention to, for someone with misophonia it is quite painful.
I cried each session for the first week. Sometimes for fifteen minutes, sometimes for five, but for some reason working out my ears brought up a grip of emotional catharsis that must’ve existed deep within my subconscious and was pushing to get out for decades. Deborah often stood behind me and softly rubbed my back when these intense, unexplainable moments would occur. We were unable to talk, but she said “I love you, you can do this,” by osmosis. It was the first way we learned to deal with the uncomfortable treatments.
I quickly found as soon as I could concentrate on something else I had to engage it. The first fifteen minutes of my sessions were often too painful to concentrate on anything, but as the hour wore on Deborah and I would look at a slideshow of pictures from the last year, or I would read comic books. I found these things easy distractions from the painful aural experience. When the hour was done I was already clasping my bag of stuff shut and putting one arm into my jacket before they could come in and get the headphones off.
It became a difficult morning routine: wake up, get together enough to move, have a minor meltdown on the way to the office. The after effects were similarly difficult. I was irritable, snippy, and downright incorrigible at times. But I didn’t meltdown on the days and nights following the treatments, they came later. I think I got pensive in the later hours of the day, dreading having to wake up and do the treatments again. When we came to the final day and the assessment showed improvement Deborah and I both exhaled a sigh of relief, but we weren’t prepared for what was to come.
Meltdowns. Five in three days. A lot of broken things. It was bad, and this is where we are now. I don’t know if it has anything to do with the AIT, but it certainly begs the question. Last week my doctor put me on more medication temporarily to “break the cycle” of meltdowns and it sucks. It slows me down, makes me feel like I’m under the ocean in one of those old-timey scuba suits with the helmet and hose perturbing from the top. I played two shows under this influence and they went well. I’ve had a couple meltdowns in spite of the meds, but they’re working. More importantly, they’re temporary.
We won’t see real change from these treatments until three months out, but after that, we’ll see exponential change every three months for up to a year. I find it strange and fascinating the effect is delayed in nature. I love the brain, it does all sorts of crazy shit.
So my mental health doesn’t boil down to one thing. I’m beating the shit out of the PTSD in therapy, I’m taking some power away from aural burden with the AIT. Next, we are hoping to work with an occupational therapist to help “soften” the house and teach me how to be a musician and stay phonically healthy. I’ve come a long way, and there’s still a road to be tread. But I have new shoes, now. Hopefully, I’ll be able to show them to you soon.