The past month or so has been pretty damn heavy (there’s that word again, Marty. “Heavy.” Why are things so heavy in the future?) for a couple of reasons. First, the anniversary of 9/11 for me, like a lot of people out there, is always a time of deep reflection upon the sadness of that tragic event. I can’t help but go back and watch all the documentaries and relive that day. And, with this being the 20th anniversary, everybody had to make some new ones, so that process certainly took more than just the one day. Second, I finally decided it was time to get on some anti-anxiety medication after struggling through anxiety/panic attacks that have been growing more and more frequent over the past six months. They started about a year ago, coincidentally or possibly not coincidentally, right after I got Covid for the first time. It has just become too much and I am definitely not managing it well at all anymore. Natural rememedies like CBD (the good stuff from Colorado) and magnesium drinks just weren’t cutting it. I had let it get way out of hand for way too long.
9/11
But, I’ll start with some thoughts about 9/11. My last post went into some of the things I reflect upon when it comes around. Today, I wanted to kinda dive into why it’s so important to me to take time each year to reflect upon what happened that day. We all know and will indeed never forget what took place in New York City on that day now twenty years ago. So today, I’d like to explore why this day so specifically affected this teenage boy from a rural Southeastern Wisconsin farming town of 3000 who had no connections to New York City. I mean, it’s affected everyone who lived through it and we collectively share some PTSD from it but I’ve never really understood why it affected me so much, as it’s basically the most consequential date for me on the calendar each year. I’m sure my wife might take offense to that but our anniversary is a date that we chose to be significant and is a happy reminder when it comes around. It’s not an emotional and mental drain on me the way 9/11 is. I don’t have to mentally prepare myself for our anniversary. I can just make a reservation, you know, because I’m half Native American (bu dump chh… but that is actually just a true statement, not just a sad attempt at a joke…), maybe buy a gift if we can afford it and then show up and enjoy the day with my wonderful wife. The worst that can happen is that I forget to make a reservation and we have to settle for our second choice when it comes to restaurants, hardly a punishment. This year, with the 20th anniversary of 9/11 upon us, it shook me for basically a whole week. In fact, it’s taken me three weeks to even begin to put together my thoughts for this blog. That might also be due to the anxiety/panic that I will be writing about in a bit, but I’m like this every year to some degree, just much worse this year.
I’ve had sort of a mini-revelation as I spent hours and hours thinking about that day. Like most, I’ll never forget where I was or what I was doing. I was in the library getting my internet permission slip verified. Not sure if kids still have to do this, but we needed parental consent for us to use the internet. Of course, I had waited until the last day to turn it in and was now late for my next class. Someone said a plane, a “Cessna” they kept saying, had hit one of the World Trade Towers. A buddy of mine had also waited until the last minute to turn in his internet permission slip and was standing beside me. “Guess that’s why they shouldn’t let women fly planes…” he quipped, in an extremely inappropriate attempt at a joke. No one laughed, and I’m pretty sure everyone made the same “come on, what the fuck” face I had made towards him.
After watching the second plane hit live, we all knew what was happening. So did the school. There was now a crowd in the library, as it was the only place with a TV in the school. We were told to go to class and not to talk about what was going on. After arguing my case with the principal for a good five minutes, I was sent to class. Luckily, the teacher had a radio and she allowed us to tune into the news so we could try and find out what the fuck was going on and if there were going to be more attacks. Soon enough, there were more attacks. Something had struck the Pentagon and a plane believed to be hijacked crashed into a field in Pennsylvania, apparently on its way to the White House or the Capitol. The principal came in and ordered us to turn off the radio and get back to work. I may have used some choice four-letter words, it may or may not have been “fuck this shit, I’m out of here,” and then left school and walked home. Then, like the rest of America, I sat in front of my TV for most of the next week. I don’t believe I went back to school the rest of that week I was so shaken.
Sorry, I was going to mention the revelation. Well, this year I figured out that 9/11 was the single most emotional day of my life. Again, that may sound mean to my wife and our wedding day but I’ve explained this to her and she understands my reasoning. So, here goes.
For those who don’t know, I am on the autism spectrum. I used to be considered “high-functioning,” meaning I was able to go to school with the rest of kids, excel in my classes, played sports, showed little to no signs of social awkwardness (though I felt a great deal), was able to graduate, hold down and excel at jobs, etc.; but, I guess that term, “high-functioning,” is not to be used anymore as it degrades people further out on the spectrum or something. Sorry if I’m misstating any of that, but I don’t really keep up with autistic Twitter, which is totally a thing, and it’s they who determine what is acceptable or not these days. But I digress…
Having autism, even on the lower end of the spectrum, or the higher end, I’m not sure exactly how that works, but being the way that I am, I still deal with (or, more accurately, mostly my wife deals with) a lot of the same deficiencies as those further out on the spectrum. I still struggle massively with emotions, both mine and those of others. It’s not that I, along with other autistic people, don’t experience emotions, it’s just that we typically have a hard time understanding or recognizing them. Even with my growing anxiety, it was my wife who would constantly tell me how and why I was feeling a certain way before I had any clue as to what was going on.
I also have the ability to compartmentalize things a bit better than a “normal” or neurotypical person. So, I’ve experienced a lot of emotions over the years but I don’t always know it or remember how they felt. But, 9/11 changed that. Every emotion that I, along with the rest of the country and world, felt that day; confusion, sadness, helplessness, despair, anger, vengeance, terror, panic, etc.; were never more acute for me than on that day. As an autistic man now in his thirties, I have never once experienced the same level of emotion as I did that day, and I know I’m not the only one. And all those feelings were cranked up to eleven. It actually broke my brain, and I’m sure many other people’s as well, as I had no way of coping with that barrage of emotions and feelings. I have never experienced that before or since. My wedding day was close, but that was more of an overwhelmed with emotion kind of thing and not like someone dumped a truckload of feelings on my head.
And that’s why I say it was the most consequential and emotional day of my life. And, after twenty fucking years, I’ve finally figured out why 9/11 is so emotionally and mentally draining on me each year. Watching the documentaries, hearing the stories, seeing the pictures or footage, all of that triggers my PTSD and I have to relive that barrage of emotions all over again. And I know this is obviously much, much worse for those directly involved in the horrific events of that day and I’m not trying to compare my story at all because it doesn’t in the least, but I’ve always just wondered why that day was the most, I don’t know, most everything day in the life of some random autistic kid from a rural Southeastern Wisconsin farming town of 3000.
Fuck Anxiety
So, one of the worst developments of the past year and a half has been a gradual onset of anxiety which has culminated into regular panic attacks. Anxiety and panic have not only never been in my life before last spring, but I’ve actually had whatever the fuck you would call the opposite of anxiety and panic. I’ve moved across the country, like all the fucking way across, six times and with little to no money each time. No problem. Didn’t break a sweat. I’ve had a gun and multiple knives pulled on me over the years. Easy peasy. I’ve been chased by a crackhead who was trying to stab me with a shiv. Was a little out of breath when I got home as some of those guys can really move, but more or less unscathed. I’ve witnessed/lived through tornadoes and…nothing. I’ve never registered a high blood pressure or high heart rate at any doctors appointment in my life; in fact, they would always comment on how remarkably low they were, in a good way. I’ve never dealt with stage fright or anything like that. Sure, I’ve had some slightly nervous butterflies before a show here or there, but that’s to be expected and, in fact, I generally feel more comfortable on stage than anywhere else in the world. So, I was woefully unprepared for dealing with anxiety and panic when it hit and started to get worse and worse over the past year and a half. I had never truly felt anxious or panicked apart from one other time which was caused by a bad combination of chemicals and alcohol that I had put into my body. That one was on me.
Now, I have dealt with other mental health issues like depression, daily suicidal thoughts, addiction, etc. but none of those, for me, and I’m only talking about my personal experience just like with the 9/11 stuff, and I can’t stress that enough, were anywhere near as debilitating as the anxiety and panic. I’ve dealt with depression in one form or another for most of my life. It’s hard to remember what I felt like before middle school, but I’ve definitely had it ever since then. And while I don’t have great coping mechanisms in place for that (I’m getting into therapy soon now that I finally have insurance again, thanks Obamacare!), I can handle it well enough by now. I’ve made a few semi-legitimate attempts on my life; once via driving into a tree at a high rate of speed (this was back in Wisconsin and it was super snowy/icy and I missed), once via opioids and booze and once via Tylenol. Yep, Tylenol. That regular-ass-you-can-buy-it-anywhere Tylenol. If you didn’t know, Tylenol can be very dangerous, causes liver damage, is known to cause birth defects and, personally, is not a medicine I think people should have super easy access to. I’ve known two people personally who died from Tylenol overdoses, one on purpose and one on accident. I’ve also known multiple people who died of opioid overdoses. But weed is still illegal in most of the country. A “drug” that works wonders on pain, anxiety, depression, vertigo, nausea, etc. A “drug” that zero people have OD’d on. That makes sense. Right…
All that being said, this anxiety and panic has both come out of nowhere and completely leveled me. It started last year, a little after I got Covid for the first time. From what I’ve read and been told, is that when Covid attacks your body, your body responds by sending out cytokines, epinephrine and cortisol, telling the body there’s an emergency and it needs help fighting this thing off. That’s normally a good thing. Your body activates its army and goes into battle with the virus. But in some people, Covid attacks the nervous system and their bodies respond the way they would respond to a traumatic experience, essentially giving them PTSD. Then comes the anxiety and then comes the panic. Fun…
Again, this started last year but I didn’t really take notice until a few months ago. My wife could tell something was going on all the way back to last year but I just kept blowing it off. What made this strange was the fact that she’s remarked so many times over the years about how nothing seems to ever make me anxious and she wishes she could know what that feels like. But since she has dealt with anxiety, PTSD and panic for most of her life, she could see the signs. I started getting really agitated about the littlest things. I started to get really sweaty and out of breath while packing up to go to shows. Sometimes my brain would shut down and I couldn’t focus on anything but the one task I was doing. Sometimes I’d pace and start to shake a little. But it wasn’t consistent and wasn’t too bad. Worst case scenario was if it happened before a gig I’d have to change my shirt before I left the house. But there didn’t seem to be any connection to anything in particular so we just chalked it up to 2020 being a shitty, stressful ass year.
But this year, things changed quite a bit. Once the vaccines became widely available, the band and I got ‘em and started booking as many shows as possible again. We were so excited to get back out there and start playing again. We rehearsed some during the pandemic but it’s hard to stay motivated when there’s nothing you’re working towards. So by the time May rolled around, we were back at it pretty steadily. Suddenly, the anxiety started getting stronger and more frequent. I kept downplaying it. “Well, it is 95 degrees outside, and you just carried 300 lbs of gear down to your car and then up onto a stage, that’s why you’re sweating so much and your heart rate is high right now.” And it kept getting worse. The one saving grace was that as soon as the show would start and I’d start jumping around a little, it would go away and I could play the show just fine.
But, in late May, I had a panic attack on stage. I didn’t know what the hell was going on. My heart was going like crazy. My fingers stopped working properly and were locking up when I would try to play a guitar solo. I struggled to take the breaths needed to sing. My legs got tight like they were prepared to leap over a car. I couldn’t focus on anything, not the crowd, not the song I was playing, nothing. I felt numb. I felt like I either wanted to curl up into a ball and hide or drop my guitar and sprint home as fast as I could (the show was about a mile and a half from my apartment).
Like I mentioned earlier, being on stage usually calms me down and relaxes me. I get to exist in what I feel is my natural environment. I get to express myself artistically and as I truly am, and people watch me, listen to me and accept me, which is not something that always happens in “real life.” I get to feel “normal” for a while. And, since I’m often awkward in real-life conversations, I enjoy the mostly one way communication. It’s easier for me. Performing is one of the few things that can actually get my brain to stop working overtime, which is a welcome respite from the other 21 or 22 hours of the day where it’s racing like it’s in a fucking Fast and Furious movie. It takes almost a miracle to quiet my inner dialogue, which is quite brutal towards me, and getting up on a stage in front of people does that. I get to just be me with the burden of myself ruining it.
Thankfully, the panic went away after the one set and with the help of a glass of wine. And, according to my wife who was there, it wasn’t actually a total disaster like it was in my head. She said she could tell I wasn’t as talkative or energetic during that set but played and sounded fine. So I got that going for me, which is nice… But after that panic attack, it started happening anytime I did anything music-related. Pack up the car? Panic attack. Rehearse for a show? Panic attack. Even just writing out a setlist or signing a check from a show made my heart race and my hands start to shake. And remember, I had filled the band’s calendar for the whole summer. We playing basically every Friday and Saturday night and I was picking up some solo shows during the week. This meant that at least two or three times a week I was experiencing anxiety/panic attacks; and they were getting worse and worse each time. Last year, I could take a dropper full of CBD oil and it would calm me down. Or, I could drink a glass of this stuff that’s actually just called fucking “Calm” which is a magnesium drink that could sometimes start to reverse the anxiety symptoms. But this year, none of that helped. It got to the point where I’d have to load all my stuff into the car, do a quick vocal/guitar warmup and then jump into the shower before I left for the show because I was so sweaty, and also because showers help me to decrease my anxiety.
Once things got that bad, I started to think back on the past year and really started to notice the other ways that the anxiety was affecting me. I could no longer get out of bed before 11:00 or 11:30am. Why? Because before all this got so bad, the morning was when I did the majority of my music booking, and since music was causing my panic, my body/brain was trying to shut down music booking so I wouldn’t have to go through that whole experience. Running errands would cause me to break out in sweats and experience shortness of breath. Why? Because one of the most common errands I ran was to deposit the cash or checks I collected from shows. I realized that I hadn’t even listened to music in months because even that would get my brain going into an anxiety spiral about my next show or the next rehearsal or whatever. I even got anxiety when I pooped. Yep, even pooping caused anxiety because, and this is very weird but very true, I would make sure to poop before going to band rehearsals because the toilets at the rehearsal space are disgusting as fuck so I always wanted to make sure and take care of that shit, literally in this case, before I went. So, pooping became associated with music which means it caused me panic. As Metallica once said, sad but truuuue-ahh.
But, I was prepared to just keep on keeping on until I noticed how my anxiety was affecting my wife. As someone who has suffered from it for basically her entire life, she began getting triggered by my anxiety. She is an extremely empathetic person, and in this case, it was to her detriment. She would feel my anxiety which would then trigger hers, so she was then holding mine and her own. On show days, she was anxious before I was because she knew mine was coming soon. I talked to her about it and she confirmed that yes, my anxiety and panic were causing her issues. We made the decision to get me on some anti-anxiety medication for the first time in my life. Luckily, our Obamacare had kicked in a couple months before so I could actually afford to go to a doctor and get some medication. The problem was that because I have autism, medications often don’t work as intended on me. My brain is wired differently due to the autism, so it stands to reason that medications, especially those targeting the brain or chemicals that affect the brain, which are clearly not designed for the autistic brain, just don’t do what doctors think they will do. The other problem is that I have never met a doctor that seems to understand this. When I tell the doctor I have autism and have had horrible reactions to medications in the past because of it, they often look at me like I’m a fucking idiot. Like those two things, autism and medication, are not related at all and why the fuck would I think that and how dare I try and tell the doctor something. But, more often than not, I am right and they are wrong, as has been the case since I was a kid.
The first doctor I saw, a white man, which I only say because I’ve never had a good experience with a white male doctor, came into the room with his prescription already written. He very briefly threw out a few drug names which I had never heard of, did not ask me hardly any questions, scoffed when I objected to some of the recommendations and brought up my autism, basically concluded that I just had stage fright when I told him how it was affecting me and then wrote the prescription and left. I was given an anti-histamine that was supposed to make me sleepy for the panic and a serotonin booster for the anxiety. He also prescribed a blood pressure medication which I explicitly told him I could not take because I had taken it in the past (to try and prevent Meniere’s attacks. Meniere’s disease, for those who don’t know, is an inner ear disorder that causes vertigo, hearing loss and a bunch of other unpleasant symptoms. I got it after being rear-ended twice within a year but doctors refuse to acknowledge that getting whiplash and monthslong concussions could possibly be related to a disease that can be affected by the nerves around the upper spine…) and it had caused severe side affects. Of course, I didn’t find that out what any of these drugs were until after I had taken the pills, gotten really sick, felt like I was about to bleed out internally (a feeling I know well as it has happened multiple times to me), was up all night shaking from the pain and had migraines and brain fog for a week after taking the medication for two days. So, back to the doctor’s office, but with a different doctor, of course.
On the second visit, the doctor again just stared at me like my skin was green when I told her about my autism and the adverse affects it has when I take medication. She said the medicine I was given is pretty standard procedure for anxiety/panic and that very few people had side effects and she’s never heard of anything as bad as what I had. When I was suffering I made a list of what I was feeling so I could show my next doctor the list. I had a list of 16 side effects. She doubted some of them but at least acknowledged that we definitely needed to make a change. She too alluded to the fact that she thought I might just have stage fright, even though I did say that I had been performing for over ten years without ever experiencing what I was going through currently and that it was affecting more than just my music, though that was main concern since it’s what I do for a living. Getting a little sweaty, shaky and out of breath when I went to the bank was not the cause for coming in. I asked what other options I had. She reiterated that the pills I had taken were the safest and most effective option I had. “OK, so what about something that isn’t the safest or most effective?” I asked slightly sarcastically but also earnestly. She said there’s a drug that doesn’t work for very well for most people and usually causes significant side effects. I said “well, that sounds like the opposite of the other drug, so I’ll take it.”
I also found out that in North Carolina (and possibly in the whole U.S.) Xanax is considered a controlled substance so she could only prescribe me five fucking pills. Great. So I can have as many as I want for the daily pill but I only get five pills a month for the acute panic. Good thing I often play 2-3 shows per week, so that math totally works out. I explained this to her and she said it wasn’t really possible to play a show on Xanax, which made me laugh a little as I have played dozens of shows on Xanax, including two the week prior; again, never for panic until the two the week prior. My wife had some old pills for her panic and she let me take a couple before the shows to help calm me down. I don’t know if it’s the autism or just my internal makeup but it takes usually double or triple the doctor’s recommendation for medicine to truly work for me. So the regular ass human dose of Xanax just slightly calms me down. I’ve seen it knock my wife out within twenty minutes so I get what the doc was saying but whenever I try to explain my tolerance for meds, the doctors assume I’m an addict trying to score more pills. It’s annoying, so I’ve given up.
And, of course, the pills that don’t work for normal people and make them sick are working great for me. My wife noticed that within hours there was a distinct change in my demeanor. I’ve had multiple instances when I started to feel the panic creep in only for it to level out at like 20-25% of what it has been for the past year. The downside is that the pills cause me store water rather than process it so I get bloated and dehydrated, which really fucks with my voice; so I can’t take them the day before or day of a show. Which is kind of fucked up. The thing I was trying to fix was my ability to feel normal again at shows and those are now the only days I feel the anxiety and panic. But, my voice would never last the three hours on multiple nights per week with those pills. I found I can take a Xanax and still sing, though my voice is usually pretty wrecked after back to back shows so I can’t do those very often. I mean, I only get five a month anyway so whatever…
But, it is making things drastically better on those other days, which has been a huge relief and a huge help for both my wife and I. She’s able to get more done during the week and so am I. The biggest thing for me was just feeling normal again, most days at least. I had gotten to the point where I didn’t think that was even possible anymore. I thought that maybe constant anxiety and panic were just going to be my new normal. I’m glad it’s not.
(UPDATE: the pills now make me sick and their effectiveness has waned. Shit…)
Anyways, I’ve rambled far too long, so I’ll cut it off there and keep you updated as I progress. Next up is trying to find a therapist who is accepting new patients AND believes that autism is a real thing. Covid has caused them to be overrun with clients and hardly anyone is taking on new patients right now. Apparently, I’m too late to the game. And it’s weird. I get that the world has been a particularly anxiety-inducing place the last couple years with Covid, the stupid election, the insurrection, etc., but maybe, just maybe, I might be right about there being some connection between Covid and anxiety. I’m right about the connection between medication and autism. I’m right about the connection between my car accidents and my Meniere’s, as evidenced by the fact that when I get regular chiropractic work done on my upper neck (again, thanks Obamacare!) my Meniere’s symptoms go away and stay away. Maybe I’m right about Covid causing my anxiety. Doctors, please be open to the fact that maybe you don’t know everything and maybe sometimes, probably not every time, you should listen to your patients as they may have insight into their own physical and mental health. Maybe don’t listen to everyone, as some people think vaccines make you infertile, cause you be magnetic or contain microchips, but maybe listen to those who present rational, science-based claims that cite actual NIH medical trials about things you don’t understand or didn’t bother learning about, like autism. Maybe… Just kidding, most doctors don’t seem to give a fuck about people’s health. They just want kickbacks from drug companies for pushing pills. That’s why most doctors only treat the symptoms and not the causes of issues. That’s why we devalue the prevention of health issues, as there’s less money in that. That’s why our country has decided to barely regulate big pharmaceutical companies so they can charge whatever they want for life-saving or life-changing medications with no regard to the human costs of doing so. That’s why we have little to no oversight over the approval of generic medications, you know, the ones people can actually afford; because who gives a shit about the working-class people. Capitalism, isn’t it great?
(dictated but not read)
