Tell Me Again Why You Can’t Work?

I find it hard to make friends at this point in my life. Not only are most of my peers are parents and occupied with the ubiquitous task of raising children, but I also don’t know who is safe to be around. When I meet someone I literally have to ask myself, “Is this person going to be a positive or a negative? Will they hold ableist views? Do they have the patience and understanding to be friends with an autistic person?

Most of the time, new people I meet bend towards the ableist side of things: they have no patience or understanding of what it means to be disabled and how difficult life is for people like me. This happened this morning. A person I’ve met since coming to Oregon posted a meme of a man who was a double amputee, his legs, and was working a construction job. The meme said, “Tell me again why you can’t work.”

Well, let me tell you. Again.

I got my first job at age 16 as a dishwasher for Friendly’s Restaurants. I quite a month later because the noise was too intense, and the pace was too fast for me to keep up. I worked pretty consistently for the next 20 years. I paid my way through college by always having a job and I worked full-time for my final two years. I got fired or “let go” of three jobs during this period, either because I made a series of social blunders, which weren’t tolerated, or I burned out (I was taking a full load of classes and was involved in student government, etc. on top of the unknown autism).

When I graduated college, I began working with kids who had “behavioral health issues”. Mostly oppositional defiance type stuff, but also autism all over the spectrum as well as attachment disorders. I worked this job for two years before getting another full-time job on top of it. Then I moved to New Mexico, where I continued working full-time at various positions I would eventually leave because I was burnt out by my autism and PTSD. I was a social worker, a landscaper, a gardener, a farmer, and finally, a therapist.

Here’s the pattern I would go through with a job over the past 25 years: I hit the ground running and immediately make myself as indispensable as possible. I work incredibly hard, take on a lot of projects and responsibility, and I shine as an employee for about a year, sometimes maybe less. Eventually I would burnout and become suicidal. I often ended up in the hospital for suicidality and would be forced to quit whatever job I was working. I took the initiative and got my master’s degree, and even finished a year and change of a PhD (which I left partly because I wanted to and partly because I was burned out). I tried to better my working situation but by the time I was 36 it was obvious my mental health was a long-term disability, which we of course now know is autism. It was always autism. Even part time work was untenable.

What causes burnout in autism? Social interaction, constant following of neurotypical societal norms that don’t fit with autism, making eye contact, trying not to fuck up social graces in the work place, masking anxiety and autistic behavior, constant overstimulation of sense with no time to recover, but most importantly: Having to be on stage every second of the work day so no one knows how hard things really are for you. If you don’t have autism, you’ll never suicidality and if I hadn’t been pulled from the work force I’m fairly certain dying by suicide would be a swift end to my suffering.

Adults with autism have incredibly high suicide rates because they are forced to work in environments the complete opposite of ideal, and they suffer in silence. Most autistic adults try and mask their autism, and this causes a great deal of stress and shame. When you are putting all your energy into not losing it at the work place you are inevitably going to lose it when you get home. Every task becomes much more difficult, like you’re moving underwater. Dishes don’t get done, rooms get messy, laundry piles up, hygiene becomes neglected. Forget about any wellness practices getting completed. I was just too exhausted to do any of this stuff.

Constant burnout with no recovery time does not work for autists. Our autism will decompensate (worsen) and it snowballs leading to complete lack of functioning in all areas of life. This is why I can’t work a real job. This is why I stopped trying. I didn’t stop working because I am lazy. Far from it, as anyone who knows me would say. I didn’t get on disability to fund my music. I did it because I had no other choice.

Let’s talk about what disability looks like. I get an $800 deposit each month that is supposed to cover my medication, food, utilities, and rent. Considering I paid into disability for 20 years, this is a meager amount. I am privileged because my wife has an amazing job and we’re able to afford our food and rent and all the other stuff, but it’s still hard and we are constantly on guard about money. As far as my music goes, I make very little. Some months are better than others, but for the past year plus I haven’t been able to make it on stage on a regular basis BECAUSE I’M DISABLED. See, even playing music requires so much effort that I often can’t do it and need to take months off from playing.

Anyone who thinks people on disability are doing it for a free ride is a dumb shit. If something happens to my wife I am completely fucked financially. I look at people living on the streets and think, “I’m one tragedy away from that life.” It’s a constant thought in the back of my head. It has been ever since I started being a social worker back in 2006. I was always afraid I’d become a client, and now I have.

Mocking people with disability shows an incredible lack of maturity, understanding, and empathy. I won’t stand for people like that in my life. It’s no use arguing with them, these days when you argue with someone you may as well be arguing against yourself. Also, arguing isn’t a strength of autism. It makes me uncomfortable. Instead, I’ll just write this passive-aggressive blog.

I don’t like being disabled. There are a lot of things I wish my brain was able to do that yours can, and one of them is handle working a job. But I accept my disability and its implications for my life. There’s an amazing amount of value in my autism and I wouldn’t trade it for the world.
People who aren’t disabled will never understand disability unless they work hard to wear the shoes of someone else. IMG_2796

My Greatest Fear

I can’t remember a time when I haven’t had twenty irrational, unfounded fears circling my head. These anxieties can shut me down, can cause meltdowns, and are always hanging out with my depression. I’m pretty sure it just goes with the territory when you’ve had a life like mine, and honestly, I don’t know what it would feel like to live a life free of crippling anxiety, so don’t feel too bad for me.

There is one fear so pervasive, in the front of my mind and all times. It causes more depression in my life than anything else I can identify. I think it is the fear of many people in my situation.

I’m scared to death of my wife dying.

Most likely, my wife and I’s relationship is not like yours. First, we were best friends for a decade before we got romantically involved. When we did, we knew it was forever from the first kiss. Because we were already best friends. Furthermore, we have dealt with more adversity in our marriage than anyone reading this will ever know. We are madly in love with each other, we only want to hang out with each other, and we go through some of the toughest shit a family can go through. Together.

Damnit. None of these words are expressing with our marriage means. It’s unconditional love at its purist. It’s unconditional support and its most powerful. It’s constant companionship; I would literally rather spend 10 minutes with Deborah than any amount of time with literally anyone else (sorry, Obamas). This isn’t the lip services I hear coming from people’s mouths. This is the truest thing in my life.

Deborah not only loves me, hangs out with me all the time, snuggles, raises the dogs with me, she also provides extremely important care for me. Deborah is what we in the disability world would call a “Caregiver”, and she is extremely good at it. Because of her vast, intimate knowledge of who I am, who I have been, and who I want to be, she is (almost) perfect in this role. No one else could ever do what she does, and that’s the truth. No one.

When I think of losing Deborah, my honest first reaction is “Well, that’s a wrap on ol’ Russ, too.” And I would immediately down a bottle of clonazepam and fall into the forever sleep. Not because I have some ridiculous notion that she and I would meet in some afterlife. No, I would die by suicide because life would be too hard without her, and it would no longer have a point.

Here is my greatest fear: I would lose the love and companionship, but almost as important I would lose the support, the caregiving. You don’t understand, I have such a hard time with life-skills. I can’t pay my own bills, I can’t hold down a job, I can’t remember what day it is or what I’m supposed to do tomorrow. I can’t keep track of my appointments or even my daily medication. All the intricate systems we’re developing to keep my life glued together would completely fall apart. I would not only have lost the most important person in my whole life, I would be destitute.

I would be in abject poverty. Most likely I would end up in a group home, which is about the worst thing I can imagine having consulted for them in the past. See, I’ve worked with people like me when I was more functional. I know the system I would become a part of, a system Debo and I are working hard to avoid.

Why am I saying all of this depressing shit? Well, I’m pretty depressed and melty today. I have a friend going through a similar situation, so the issue is in front of my head. But most importantly, YOU NEED TO KNOW.

You need to know because if this ever happens I’m going to need you, my friends. I’m probably going to have to live with someone. I’m going to need a lot of help. I’m scared that won’t happen. This blog is an insurance policy for an awful life-situation that’s completely plausible. I don’t have a family, so to speak. My father and I talk, my two cousins and I talk, but that’s it. My safety net is torn apart. I will have nowhere to go but a bottle of pills.

I’m not trying to scare anyone, or be overly morbid, I’m just trying to be honest. I always try to be authentic, this is no different. It’s a future cry for help before it’s too late.

PS, Deborah is in fine health. We both are, other than my usual bullshit.

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



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.