New Music Manifesto

IMG_1530I’ve been driving around the country for the better part of three years, playing music, sleeping in my car, seeing amazing places, and meeting new people. All these things are really brilliant and I’m quite privileged to do them. I have had a lot of people comment on their jealousy over my life and it has humbled me.

Here’s the other side of what I’ve been doing for the past three years: constant autism meltdowns on the road, sore back and neck from sleeping in a Honda Element towards the end of my 30s, spending more money than I have, stressing out over whether or not I can afford publicity, getting stuck in a city/state more than a day’s drive from my home and support system, crying, screaming, punching, unable to breathe, stress headaches, and broken equipment I can’t possibly afford to replace. For all my trouble and effort, I have never made a dime, but I have lost an infinite number of them.

I want to break down what it takes to “make it” in the music industry (e.g. people all around the country know and love your music). First off, you have to have a lot of energy and a thick skin to pull you through countless, thankless shows in towns you have never heard of: For every San Francisco there’s a dozen Springfields. You have to have no financial responsibility towards anyone but yourself: You’re going to be very poor and every cent you make is going to go towards your budding musical career (and a lot of cents you don’t make, too). You have to spend money constantly: touring consistently means constant gas, food, and lodging; $2-3k every time you want to record and press an album (which no one will pay for); $3-10k for publicity every time you want to release; paying band members who will not and should not work for free; constant submission fees to blogs and songwriting contests and festival entries. You have to be mentally sound to a certain point: you must have room for some of your mental health to collapse and still be functional. You stay up late every night, constantly talking to people, promoting yourself and trying to get them to listen to your new single on the drive home on Spotify, which you will not get paid for. Spend more money on radio campaigns, get duped half a dozen times by scams in the process. Feel flattered when someone offers to be your manager, pay them a fee to give you some lame advice about what to do with your band that they learned off some industry blog post you could have read yourself with one Google search. (Not me, however. I’ve had one manager and she was fantastic.)

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Performing at Big Bend National Park, TX. November, 2016

And no one will listen to your songs. You’ll check your streaming stats and it’ll show less than a hundred people listened in the last thirty days and no one is paying you for it. Or you do have a lot of streams and you realize you’re not getting a dime for them. People who do listen to your album don’t talk to others about it, so you don’t grow your audience. You pay for ads on social media to no avail. You book shows constantly, play until your hair starts falling out, work at a coffeeshop saving money to pay for the next tour, and when you get home you have nowhere to live. You are preyed upon, given countless false promises, and the feeling of getting smoke blown up your ass becomes commonplace.

One out of every thousand bands following the industry formula is signed to a real booking contract, or a real management deal, or the coveted record deal (which doesn’t mean shit today, other than you’re about to go into major debt). Out of every fifty bands getting this kind of break maybe one will stick around long enough to release three to five singles, get on a bunch of playlists and break through to the mainstream. Still, most of them will be gone in less than five years, anyway. They’ll emerge from their flirtation with rock-stardom chest deep in debt and with no real-world skills to pay it off. Basement living at its finest.

And you probably make great music people should hear, but it doesn’t matter. You’re nobody to most of the country, and it hurts and breaks you down. It beats your brow into submission until you join the ranks of the “normal” American: holding down a nine to five, denying your artistic inclinations, and buying a house you’ll complain about for twenty-five years. If you’re lucky you’ll continue to be a weekend warrior, playing local bars and clubs to get your fix.

If you’re lucky.

I’m done with all of it. At some point in my 20s and 30s I got this idea that if I worked hard, toured hard, and released plenty of material, someone would recognize the worth of my music and I’d be on my way. I toured all four corners of this country and everywhere in between. I payed big bucks for a major public relations firm only for them to effectively ignore me during the campaign. I’ve had mental breakdowns countless times across the country and I’m just not going to do it anymore.

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In the studio, paying to make an album no one will pay for. June, 2017

I’ve shifted my thinking about music and success. I’ve shifted my thinking about what I’m willing to do to make a living with my guitar and voice. After three years of a lot of pain I’m putting it behind me and looking towards a more realistic and relevant future. As most readers will know, I am moving to Corvallis, OR in two weeks. I am leaving the relative security of the music scene I started in for non-musical reasons, but the move allows me to make some new musical moves and has opened my thinking about what I do.

A musician living in New Mexico, whether it be Albuquerque, Santa Fe, or one of the millions of rural acres in the state, will always have a difficult time on the national scene for one simple reason: Geography. You must travel six hours to get to any major market (Denver or Phoenix), and one of them is crap for music (Phoenix… sorry but it’s true). Furthermore, to get to any other market, major or minor, you have to drive another six hours. Musicians in New Mexico and other markets like it (I’m thinking some midwestern states and some of the mountain west) are isolated and are therefore stuck playing their local scenes and bars in small towns throughout their state. You can’t make a living doing this; there simply aren’t enough gigs to go around. It’s really shitty, because there are some great bands and songwriters from New Mexico (and Montana, and Kansas, and South Dakota) and they will never really get a chance to even do what I did, because it takes too much time and money to be feasible. Throw the social clock in the mix and people end up giving up without anyone other than their local fans ever hearing their songs.

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Having an epiphany in Anacortes, WA. May, 2019 Photo by John Ellison

I had an epiphany while talking to a friend of mine on a recent visit to the Puget Sound: searching for national success, whether it be from an isolated location like the Southwest or a populated location like the East Coast, is bound to be disappointing. So how does one “break out of the town they came from” as Aesop Rock once so eloquently put it? By becoming a regional artist. It’s a mistake I made when I quit the real world and joined this circus called the music industry. I was blinded by pipe dreams, driven by unrealistic goals and hope, and fueled by a constant barrage of encouraging comments from my friends and other people in the music industry. I spent thousands running around the country, playing in places I would not be able to play again for another year (in order to establish an audience in a city, you have to hit it up at least three times year, more likely four), wasting my time. I could have been focusing on everywhere in between Phoenix and Denver and I’d probably have lost a lot less money.

But being isolated in the southwest made me think there was nothing to be made on the rocky mountain circuit; no money, no audience. I wanted my songs to be famous; oh, the hubris of youth. Moving to an area where I have access to not one but four markets, two of them major, made me realize I should be focusing on the Northwest region for the majority of my time. Build a name in the scenes closest to me, start making money. Stop worrying about selling the recorded work and focus on playing real, authentic shows where people can connect with me and my music.

I played a show in Portland, OR in the spring of 2018 at a place called Artichoke Music. The room was “packed” meaning there wasn’t a table or seat open, but there were still less than 50 people in attendance. I played a 30-minute set to a rapt room and it was one of the best experiences I ever had. A week later I repeated the feat to a smaller room in Union, WA. These shows didn’t expose my music to a large crowd, but the crowd that heard it bought music, followed me on social media, and continues to engage my world. This is more important to me than gaining a national audience.

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At Artichoke Music, Portland, OR. April, 2018

I don’t want to be famous. Jesus, could you imagine what a disaster it would be? It would kill me. I want people to hear my songs, and I will continue to create and record on a constant basis, releasing music as soon as possible after I write it. I have a goal of playing one hundred shows in 2020: with 95% of them being in the Oregon or Washington areas. I’m not giving up on my music career, but I am shifting how I think of it. I don’t need the adoration to know my music has value. Adoration is as fleeting as becoming Instafamous (pretty short shelf life on that…). My focus is to become the absolute best writer and performer I can be, all else is side-business. No more wasting thousands on faulty publicity campaigns resulting in nothing but disappointment. No more wasted meltdowns on the side of the road in the middle of nowhere Idaho. No more canceling tours I spent months booking.

Keeping it regional will allow me to cast aside these traditional moorings of the music industry. I just wish I would have thought this way years ago. There’s nothing wrong with only local or regional people knowing and loving my music. It means something to them, and that should mean something to me.

So fire your manager, if you have one. Don’t get sucked into the many, many industry scams preying upon young, hopeful musicians. Focus on your region, make a name there. They’ll care more, you’ll be more fulfilled, and you may just end up with some money in your pocket.

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The Burden of a Good Day

This post was originally written in fall of 2018.

Russell James 10 may 2019Something I’ve thought about for years but haven’t ever mentioned to friends is how one of my “good” days is almost always followed by a “bad” day. “Good” meaning I was able to walk through the day, completing tasks and recreating and socializing with a strong level of coping with my braincloud. “Bad” days meaning the exact opposite: depression, meltdowns, really nasty self-talk, and extreme impairment in executive functioning and spatial reasoning (I walk into shit all the time). I know putting judgements like “good” and “bad” on my days is probably not helpful, but it’s something I can’t help doing at this point in time (but I’m thinking about working on it).

I had a great day yesterday. I woke up with an energy I hadn’t felt in months, “My brain feels like it clicked or something,” I revealed to my wife during our routine morning tea and coffee session. I had a plan to head to town, hang out with one of my friends, look at records, and look for some cool birds down by the Rio Grande. It was a good plan, and I pulled it off. I had fun with my buddy, playing video games and running a few errands (I even drove!), then I headed down to the river and hit a trail.

Albuquerque’s bosque area (officially the Middle Rio Grande Valley State Park) runs north to south like an artery through the city along the banks of the Rio Grande. It is a forest of cottonwood, oakbrush, tall grasses and reeds, with a series of trails running like capillaries on either side of the river. It, along with the myriad of open spaces in the foothills of the Sandia Mountains, are the best ideas Albuquerque has ever had. There are a lot of things distinguishing Albuquerque from any other metropolitan area in the country: the abundance of green and red chile resulting in a culinary culture unlike any other, the fact that Breaking Bad was set and filmed here, and The Bosque.

I used to live mere blocks from it before we moved to the mountains east of the city. I enjoyed my morning walks along the western bank, where I was often lead by two coyotes 30-50 feet in front of me, finishing their morning hunt (every morning, if I awoke early enough). I would get home and pull the goatheads out of my shoes before going into the house. (“Goatheads” a horrific byproduct of Puncturevine are basically tiny rocks with three to four poisonous spikes sticking out of them and they are the bane of every New Mexican’s bare feet and bike tires. Sometimes there was a mist coming off the river and I would hike up Dog Biscuit Hill and watch the sun rise over the mountains and slowly burn off the fog. What I’m trying to say here is it’s a really special place to me and most other people in the city.

Yesterday, I was specifically down there to find some birds with the new bins my wife got me for the holiday. Mostly mountain chickadees and one hairy woodpecker were all I saw as I walked through the hibernating forest, wearing its best winter brown. The river was quite low, but with the previous weeks copious snow fall, I thought it would be up to level as soon as Valentine’s Day. I walked through the reeds to reach the bank and I thought, “This has been a very good day.” The immediate follow up to this thought was, “Tomorrow is going to suck.”
For me, having a good day is a burden because of the amount of energy it takes for the good day to happen. For neurotypical folks, good days are just there. They happen without much work. A good day could be every Saturday, because you don’t have to work, you’re hiking or doing something else you love, you go see your friends, all on autopilot. People who are neurotypical don’t often have to think about making these things happen. Those of us who are neurodiverse must be both prepared and intentional about everything I just mentioned.

Generally speaking, it just takes a lot of energy to hang out with friends because I tend to wear “the mask”, and I have to follow along with social norms that might not make sense to me. I have to take great effort not to turn the conversation into a monologue about why I love whales so much. I have to make just enough eye contact to not look weird, when eye contact makes me incredibly anxious and uncomfortable. When I go to a public place I’m accosted by noise, awful smells, bright lights and sun, and of course, other people. Everything I just mentioned gives me a physical feeling of pain, nausea, and extremely uncomfortable jitters (like I need to jump out of my skin, a claustrophobic feeling).

It was smart for me to go down to the bosque after a day of this type of assault; connecting with nature always heals. Even though I took a nice long hike along the river, by the time I got home I was completely worn out. My whole body ached, and it felt like a storm was gathering in my brain. I did not sleep last night.

This morning I had a meltdown. I’m still in it, kinda. Writing this particular post has been a way to pull me out a little. It wasn’t unexpected. It happened because I was having fatalistic thoughts about my future and the storm just swept in like a tornado. Thanks for reading this time, folks. It was important I write this.

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GHOSTS

The first single off of my new album drops today (link below), but this rests only in the margins of this post. The song is about first, my wife and how she pulls me through life, often kicking, screaming, and punching walls. It’s about receiving care. The second verse is broader, about how we as a society have devalued interdependence to our peril. The shining light of this song comes from the facts that we are not alone. We are surrounded by others like us, and most people I know are prone to help when things get rough.

Yet here we are, resting comfortably in a society which looks down on people who are dependent on others for their care. We are seen as a drain, wasted potentials, something to be forgotten and left to die. One of my biggest struggles over the past 2-3 years is the growing dependence I have on my wife and certain special friends to be my caregivers. Because I, too was ingrained with the same cultural values as everyone else. “Pull yourself up by the bootstraps, everything is your responsibility, you can’t count on anyone in this world.” For a long, long time I did this. I learned to act like people who were well liked. I realized at a young age, I was very different from other kids and there was not going to be anyone there to protect me. I was raised with fairly absent parents (perhaps they were there physically, sometimes, but they were never there emotionally). I got hit a lot, I was told I was stupid, I was told I was a bad kid and wouldn’t amount to anything. I was told I couldn’t take responsibility.

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This is me, reflecting on how much responsibility I can’t handle. Just kidding, I was trying to look cool for the video shoot.

It’s taken me a long time to realize none of this is true. These uniquely isolationist ideas are implanted into our brains from birth. We grow up with them hammering in through grade school and on into our lives. It results in two very dangerous ideas: people who are sick, chronically or not, receive no respect or reprieve for an illness which isn’t their fault. Second, it creates a mentality where we should not ask for help, asking for help is a negative trait.

Do you see how full of shit this mentality is? I suffered silently for years with my neurological impairments before I felt confident enough to talk about them. The same thing goes for my PTSD. Some of you may look down on me because I can’t work a “normal” job because the only work I can do is writing songs (and my various ailments often inhibit this job, too). And because that work doesn’t make money (yet, fingers crossed), I have very little value to the world. “Why would anyone choose to help me?” I’ve often asked.

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My love, my life. The Helper rests after a hike when I was living down in Big Bend. She’s not trying to look cool at all. She’s cool without trying.

Having this question at the ready defeats me before I start. It’s already difficult to ask for help, but now my brain tells me I don’t deserve it. This isn’t some natural function of my impaired brain. It’s the product of our society’s elevated importance of self-reliance. And then I’m inevitably turned down when I do ask for help, which is why I have only a few friends (and my wife) I feel comfortable calling on when care is needed. I’ve been turned down by so many of my friends that I don’t feel I can trust them with my well-being anymore. Isn’t that fucked up? It’s really unfair and really hurts.

I’m chronically ill. I’m not getting better. Like others, I must accept this, and I continue to have a hard time. I still believe it will magically disappear someday. It hasn’t for 30+ years, there’s no reason for me to hold on to this hope anymore. Another bullshit idea wired into us is giving up hope is bad. I think this is true for some stuff like if you have cancer you should do what you can to fight (or don’t, it’s really your choice). But with chronic illness, hope is the glue that sticks you in place.

I don’t think I can truly move forward until I voluntarily give up the hope that my mental health disabilities will go away. The difference is it has to be my decision to give up the hope, this is what makes it different from losing hope. Giving up the hope my life will ever be “normal” allows me to put hope in another thing: The future, a new kind of life; different, but perhaps more meaningful.

Also, check out Ghosts. I’m sure you’ll like it. It’s out now on iTunes/AppleMusic, Spotify, Tidal, Google Play, Amazon, etc. Visit my site for more details.

Ghosts on Soundcloud

Time for Change

I have been Russell James Pyle all my life. Russ, RJ, Russell, Russell Sprouts, Roos. I’ve gone by a lot of names. My first two solo recordings were under the moniker Russell James Pyle, for what reason I don’t know. I guess I thought it sounded cool. RJP has been an anchor in my life, as all names are, but it’s time to pull the anchor up and move forward.

A lot of people have noticed I’ve changed my professional name and it will become much more pronounced with the release of my latest album in April. In the spirit of authenticity, something I prize a great deal more than any other trait, I’d like to offer a type of explanation. While not exactly candid, it provides some insight into my choice.

Russell James Pyle was abused. Russell James has stood up to the abuse and is proactive about healing the trauma left in its wake. Russell James Pyle had no awareness of Self. Russell James is aware of the true nature of the Self and uses this knowledge to grow. Russell James Pyle was lonely, especially in groups, and even amongst friends. Russell James is confident his true nature relies upon solitude and recognizes the immense beauty found in being alone.

This has been a year of change for me. The changes have come from a deeper understanding of my troubled mental health and I believe they will lead to a more enriching and engaged life. In order to move forward I needed to leave some things behind me. All the shame and rage and all the toxicity associated with my past has to be purged. It’s a life-long project for me. The first step was changing my professional name to reflect the person who has emerged over the past twelve months.

The name change was flying around the back of my head as I was recording my album, and there’s no coincidence in the parallel between a change in musical direction and the change in the moniker. As I was putting the finishing touches on the album in September, I had a deeply personal experience and it pushed me to make the decision. Although I won’t detail the experience (it’s personal), suffice it to say it was a watershed moment in my life. My core beliefs have been based on my past and these beliefs are the foundation for everything else about me. One does not go about this much schematic change willy-nilly. It has been difficult, more so than I could have imagined.

Letting go of a narrative informing the way I have felt and behaved for decades is some serious business, and I’ve had to go to work. It’s painful, but I’ll continue the work in 2018 because it’s worth being done. Changing my name was the first step in another long hike. I can’t wait to see the view at the end.

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Mental Health Awareness Year: Redux

2017 is coming to a close and we all say thank you. It was a year of turbulent politics leading to further divide amongst our global population. Weather crises, tragic deaths, the West Coast is burning; once again my dear readers, we sit on the brink.

I’m staring down the wake of this year through the lens of where I was at Christmastime 2016. I was trapped in my brain and caught in a cycle of ferocious suicidality the likes of which I’d never experienced. Stuck on tour in freezing cold weather with anxiety-inducing sheets of ice coating the road. Entombed by the East Coast’s blaring horns and glaring lights. It almost happened twice: once when I had every intention of jumping off the Griest Building in downtown Lancaster, once when I had every intention of walking onto I-40 somewhere in the middle of the country. Each time I was physically stopped by my wife, and I am grateful.

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My amazing wife in Colorado this summer 

 

When I got home from last year’s disastrous and incomplete winter tour, and when I went back on the medication holding my fragile sanity in place, I wrote this blog post. I made a commitment to disclosing more about my mental health with the intention of bringing a brighter sense of awareness all to my friends, followers, readers, and listeners. I asked people if I could lean on them and offered my shoulder. I held up this commitment, for better or worse, all year long. It led me to reveal some of darkest corners of my history, but also led my loved-ones to a better sense of who I am, why I am the way I am, and what they should do. IMG_2984

I discovered a great deal this year. One of the most important of these findings: with mental health, it’s never just one thing. Unlike our physical bodies, which are much easier to pinpoint problems (“My ear hurts really bad inside, I must have an ear infection.”), our mental health is much more dynamic. It isn’t just PTSD hitting me like a ton of bricks, it’s serious family of origin issues, it’s my sensory processing disorder. All of these things work together to make me who I am and to cause a lot of problems with the way the world works.

The two most significant findings by my team this year were the severity of my sensory processing disorder and the impact my upbringing has on my mental make-up. I talked about my hyperacusis in this blog here. I didn’t talk much about how it roots me on the autism spectrum or the social behaviors I have long cultivated to compensate for my lack of social skills, and perhaps I should write that blog, but my team and I have come to understand my “meltdowns” are more a result of my sensory integration concerns and the autism spectrum than of PTSD (but they are working in tandem to make me miserable). I also did not disclose a great deal about my family of origin concerns, because they are sensitive to my family. I feel I disclosed enough, and I don’t plan on sharing any further about that particular issue. I shared quite a bit about quite a bit, yeah?

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It wasn’t all bad: Good times on the beach…

 

Divulging the circumstances leading to the development of PTSD was an incredible experience I will cherish for the rest of my life. The response I got was overwhelmingly positive and I felt really great for a couple days. My friends and family came through, especially when some asshole trolled me. They weren’t going to let something like that happen to me when I was so exposed and I felt protected and safe. The exact opposite feeling from what I grew up with. It was what we call in psychotherapy a “corrective emotional experience” and I want to thank all the friends and strangers who lifted me up after my posting.

Another reveal I retain as special was discussing my disability. While on my summer tour I was graced by a conversation with an expert on disability who helped me understand who I am in light of this designation. I am on disability, something I’m no longer ashamed to admit. I think I was ashamed of it because I wasn’t sure if I deserved it (although we got our decision back in a matter of weeks due to the decades-long documentation of said disability). My sister further shamed me by insinuating I was on disability so I could work on my music career, and planted this awful and untrue thought in my head. The fact is, my disability check barely covers my medical bills. The fact is, my music career is not immune to my disability. I canceled probably 30% of my shows this year due to it, and a booking agent told me they were afraid to work with me because of it. Although these last two situations make me incredibly sad when I reflect on them, they also have a backhanded effect of lifting me up because they validate my illness and neurology. And again, opening up a conversation about my disability offered an opportunity for a lot of my friends and loved-ones to understand my situation better.

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I recorded the most ambitious and complicated music of my career in spite of my disabling mental illness. That is something worth sharing. 

 

My readership went up dramatically this year, and I can only surmise this is because you people like to read about my pain. I mean this as a joke, but there is truth to it. The blog posts getting the most attention were the ones disclosing the most painful things. I think this is because more people go through awful shit than care to admit, and reading about other people’s awful shit is validating. Reading about other people surviving their awful shit inspires us to survive ourselves. Writing about my awful shit obviously has helped me through this year; I’d say I was depressed a good 90% of the time and sometimes writing these blog posts was the only meaning I got.

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It’s a climb. Always. But the view is worth it.

 

But it’s also exhausting. 2018 won’t be a mental health awareness year, not officially anyway. You’ll likely see more reflective nature writing and spiritually-based work from me. I have a new album coming out, I’m sure you’ll read a lot about it. I hope to retain my readers from this past year, but I won’t be dropping any bombs like 2017. I want to express gratitude and love to everyone who has supported me, this blog, my music, and my family this year.

Thank you, beyond the earth and the sky.

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I Can Hear You Now

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.img_1816

 

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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.

Grateful

Grateful

I met my wife, Deborah when I was a junior in high school, somewhere around 16-17-years-old. She had long blonde hair, down to the middle of her back, she looked pretty sporty with her constant hoodie, and she hung with a crowd I wasn’t quite familiar with. Deborah worked on the set of a school musical where I had a supporting part. I don’t remember much interaction with her, as she was the quiet type and I was more interested in fitting in. Fitting in, to me, was about being as attention-grabbing as possible, so I was loud, ready to do anything for a laugh, and seemingly always on stage.

The following year I went on a water-skiing trip to which Deborah was also invited. We actually talked on the boat: Deborah was smart. I was intimidated because I️ was dumb (at least this is what I was told throughout my life). Deborah was in all the smart classes, had a position on the yearbook staff (not nerdy at our high school, more elitist jerks than anything else), was a star soccer player, and had an impressive collection of hooded sweatshirts. I only had one, it was black, covered in punk patches, and it smelled pretty bad. IMG_0009 We sang in touring choir together (I can’t remember why I joined in the first place, I was a constant troublemaker and foil to our director’s attempts at order). We got to know each other on a weeklong school trip to a monastery in Massachusetts. There may have even been a graduation day picture taken of us; who knows, it was 20 years ago.

In college, we became best friends, and quickly, via this new technology called “E-Mail”. I was going to school in the middle of nowhere Kansas and she was in the mountains of Virginia. Almost every day saw me drudging across the small but cold campus to the computer lab and hoping to get another intriguing response to whatever thread we had started. The conversations opened my mind to new ideas as well as a Deborah I never thought I’d know. One time I expressed shock over her use of the word “fuck” in an email. That was my word! Not hers! This email friendship came to a head when I️ decided to transfer to Eastern Mennonite University before the start of my junior year of undergrad.

Deborah and I had a standing lunch on Thursday afternoons during the fall of 2000. She continued to teach me things in such a calm and loving way. We would talk about my burgeoning mental illness, theological debates over issues such as the LGBTQ community (I was a theology major), philosophical debates over whether a soul exists or not (I was also a philosophy major), and we would talk about the state of social justice in the world (we were both also social justice majors). Our time in college watered the seeds of our friendship, and although we ran in quite different circles most of the time, I considered Deborah one of my best friends, and certainly the only one who was truly reliable.IMG_0008 We graduated college and Deborah moved to Philadelphia, whereas I settled in Lancaster, PA, a smallish burg about an hour west of the urban sprawl of Philly. Lots of friends moved to Philly, so needless to say I was there pretty much every weekend, trying to extend the college experience. Surprisingly, I saw Deborah very little during these visits since I was still caught up in a party lifestyle where my Philly priorities were about seeing Phillies games and getting as drunk as possible on Neighborhood Specials (if you know what it is, you know what it does). This practice changed with the death of my uncle.

When he died Deborah stood right beside me. Every friend I️ had in Philadelphia at the time was there for me, but Deborah stands out. She sat on her stoop with me for hours as I cried, she rubbed my back softly to let me know she was there and was a comfort. Deborah eased those days until they passed. Then her tragedy struck, and I felt unable to reciprocate the comfort due to my own mental illness finally showing its full strength.

Deborah’s father died in 2005 from cancer. Deborah had been living with her parents, acting as a caretaker until he passed in July. Not much for crowds, I️ stuck to the back of the hall where his memorial was going on and sent my love and care to the front row where my best friend sat. I️ wish my personality allowed for me to have been right in the thick of it, but no. And by July of the following year, I️ would be 2000 miles away.

Deborah was the first friend to visit Albuquerque after I moved here in 2007. She came to see me because I’d had my first major mental health episode a month or so prior to the visit, and she wanted to come out and be there for me. I️t was the first time someone had sacrificed their own desires, money, and time to help me through what was shaping up to be a storm that would engulf my life in the years to come. A storm Deborah would weather with me. IMG_0034 Deborah came to visit a couple more times on happier occasions. During those times I️ was engaged to a woman and the relationship was anything but healthy. After this woman and I️ split, Deborah and I️ spent at least an hour a day on the phone with each other in the summer of 2010. She made plans to come visit me for Thanksgiving, and we made plans to meet each other in San Francisco when I️ was going up there to explore graduate study in transpersonal psychology. This particular trip was colored by a very specific email exchange a few weeks prior to.

See, Deborah and I️ have always had a lot in common, but our pasts have shown major differences as well. I️ was the party guy. I️ thought this was my authentic self: gregarious, outgoing, extroverted, loves to drink and yell and cause a scene. Loves to be the center of attention. In actuality, I️ became those things because I️ thought it was what everyone else wanted me to be. This fake personality was driven deeper as people expected me to act this way. Who was I️ to step out of their pigeonholes For someone with neurological concerns effecting my social skills, I️ was being rewarded for the behavior and it cemented itself within my locus of control for quite some time. Deborah, who was never a teetotaler, was much more subdued (this is not to say Deborah didn’t enjoy going to parties). This main difference caused a bit of a schism in our friendship, seeming to confine it to more sanguine times.

During the summer of 2010, I️ feel I️ grew into myself. I️ grew up, I️ became what I️ was meant to be. Deborah was on the phone with me every night, listening in as this process took hold. For someone who is not neuro-typical, it takes a longer time to find one’s self. I️t certainly was the case with me. But as I found myself, I also found someone else. Slowly, my attraction to Deborah, both physically and as someone who would be a life partner, grew.

Deborah began coyly approaching the subject of pursuing a romantic relationship early in 2011 during a trip I️ took back east to see friends. Me, being mostly oblivious to people tones of voice, expressions, and passive expressions, had no clue she was putting out a feeler. She sent me a not-so-coy email not long after, explicitly talking about exploring a relationship with me. I️ sure panicked. Here was my best friend, the only one I’ve ever felt I️ could rely on, asking me if I’d be interested in a romantic relationship after all these years. I️t scared me: I’d never been in a healthy relationship. I️ had no idea what it would look like or how I️ was supposed to act. I️ responded in kind with a full-blown rejection email, refusing to discuss this issue, because I thought a romantic relationship would elimnitate a friendship I so greatly needed.IMG_1732 Now we’re in San Francisco, spring 2011, a few weeks following the email exchange. Deborah was visibly upset and I couldn’t understand why. Now, 6 years later and armed with a greater understanding of my neurology and the effect it has on my social skills, I know why it was so confusing. We actually had a good time on the trip, but looking back, it should’ve and could’ve been so much better. I remember flying home confused, because I did love Deborah, and I did see a future for us.

Fast forward a month or so, I completely fall into one of the top five meltdowns I’ve ever experienced. I ended up in the hospital due to coming very close to dying by suicide, and my father came to “assist” me with reintegration. Needless to say, this was a bad move. My disparate relationship with my father meant he had no idea what was going on and how to treat it. When he left I was still actively suicidal, afraid I was going back to the hospital. Deborah called. “Do you need me out there now that your dad is gone?” I’ve never answered something with more surety: “Yes.”

When I picked her up at the airport not long after, I saw her, we embraced, I cried, and I immediately knew I was in love with her, and the dark cloud enshrouding my brain immediately lifted. Once we got to my meager South Valley house and started drinking a little scotch and looking at old pictures… well… nature took its course. From the moment her lips touched mine I knew we would be together forever, and I knew this woman would stand by me and lift me up when I couldn’t walk on my own. As we lay there, our first night as a “couple”, something was said between us, and while I can’t think of the exact words the sentiment is clear as day: “So I guess this is it, this is our lives. I love you.” After almost a year of long-distance dating, she moved to Albuquerque and we were married. This is where the real story starts.

My mental health and the composition of my neurology makes life difficult for both of us. Deborah has to watch me suffer in ways my friends, fans, and readers have no clue about. She was watched me destroy as well as create. She’s seen me going to a treatment center and made the weekly visits, including having Thanksgiving there in 2014. She’s flown across the country, taken buses to rescue me when tours have fallen apart and I’m stuck having a nervous breakdown in some state across the country. She holds me when I’ve completely lost all sense of reality. She works from home when I’m actively suicidal to watch over me so I don’t do something we’ll all regret. She is a balm to my ever-deepening wounds.IMG_0010 I’m grateful for my wife, my lover, my best friend, my defender, my rescuer, my balm: Deborah.

And you should be, too. Your friend Russ would be dead if not for her.