Learning to Live with My New Brain

When someone loses a limb, they have to learn to walk with their new prosthetic. Similarly, when I started finding the right medications in 2015/2016, I had to learn how to go through life with my new brain.

If you’ve ever had any friends that show symptoms of mania (such as in bipolar disorder) then you know how unnerving their never-ending stream of thoughts can be. Excess dopamine in the brain can result in things like mania and schizophrenia, and that’s exactly how the stimulants I take work – they end up causing my brain to pump out a lot of dopamine. ME/CFS causes me to lack both physical and mental energy. Fortunately, the treatment provides both… unfortunately, they’re given in uneven amounts. Each dose grants me about 4 hours of physical energy and 24-36 hours of mental energy and wakefulness. As a result, at the end of the day I often lay in bed and type way too much. I’ll no longer have the energy to feel like doing anything beyond laying in bed, but my brain is still going at full speed and I end up typing a lot.

As I’ve explained before the first step I took to start figuring my issues out was giving my brain a year’s rest away from Adderall because it was the only medication that ever provided me with energy, but I had become too tolerant and it no longer worked. When I started using it again, it was working again I finally had some energy to get things done… but I had too much.

I had grown apart from my real life friends for many years but I had some online friends I had been close to during those years. Despite the mania, I at least knew to keep my crazy thoughts out of the public eye, so what did I do? I spammed my friends’ private messages – two friends in particular, Sher and Amanda. It wasn’t uncommon for me to leave them 100-300 messages over the course of the night, which they would wake up to. Amanda told me she had to start muting her phone before going to sleep because my messages would vibrate the phone until it fell off her bedside table. She didn’t mind, though. In fact, both of them were either extremely patient good friends or they found my rants interesting enough to keep read. Sher told me she would read my messages on the train on her way to school. Regardless, I had an outlet for my runaway thoughts and an audience to receive them.

I quickly noticed a problem, however, I’m not always a manic maniac. I started cycling my meds to avoid tolerance occuring again so I’d go from my brain working overtime at the peak of my med cycle to becoming a braindead zombie at the low point. I’d leave messages and ask questions that I wouldn’t feel like responding to or following up with by the time they responded. These two polar opposite versions of me struggled to form the collective unit you know as Adam. Zombie Adam hated dealing with the problems that Crazy Adam created and vice-versa.

Side note: any close friends of mine know that I use a couple slang terms to refer to my two mental states. If I’m all stimulated and manic I say that I’m “blasting,” and if I’m on the other end then I’m “crashing.” Blast and crash, that’s my life. At first I was very careful and only blasted 2-3 times per week but I eventually worked my way up to my current cycle which is typically 5 days of blast, 2 days of crash.

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When I returned from the bathroom at a Judas Priest concert and glanced up at the big screen, I thought the universe was speaking directly to me. In addition to the “blast” connection, I also use “Master” in many online aliases, including my eBay/Etsy shops.

I realized I needed to set some rules if I was going to resemble a functional human being. If I knew that I was going to spend the next day or two crashing then I would have to avoid leaving any open-ended conversations because I wouldn’t feel like dealing with them when I woke up the next day. Early on it was difficult to stick to this because I felt like all my thoughts were very important and needed to be said. After all, it had been many years since I felt anything at all… I needed to express myself! After a couple years though, I felt like I got most of the important stuff out. Nowadays I mostly stick to this rule but occasionally still screw up and leave myself a mess to clean up on my rest days. Beyond that, instead of firing off messages directly to friends I instead type up my messages in Notepad and wait on them for a bit. If they’re still important to me later on then I’ll know they’re worth sending. I’ve also gravitated towards chats where I can type as much as I want without needing to follow up later. I’m using Discord less and less (every time you open it, you’re bombarded with notifications) in favor of IRC, where the conversations end as soon as I stop chatting.

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Here are the stats for #chat in IRC. As you can see, I (Barrydarsow) am by far the most active user. The stats here are recorded over a span of the past 14 days: https://chanstat.net/stats/rizon/%23chat

This all allows me to handle the mania well enough. What else?

When I added high dose Baclofen to the cocktail, things got more interesting. After giving my brain a rest for a year, I had a couple college classes I needed to finish up. I’ll never forget walking to class from the parking lot during an autumn month and thinking that the leaves looked strange. They were… beautiful? My mom had been pointing out nature scenes to me for my entire life but I never understood what the big deal was. Yeah, the sky is pretty. So? This was different though… I felt it! As I exited my car and walked to the classroom, the surrounding autumn leaves filled me with a strange emotion I’d never felt before, or at least hadn’t felt in a long time. It was a positive emotion.

As time went on I started enjoying many other things. To put things in perspective, let me explain what I surrounded myself with during my worst years. I disliked anything new or unfamiliar, it took effort and brain power – which I didn’t have – to process and understand these things. As a result I stuck to what was familiar. There were many years where I listened to nothing but Black Sabbath. To vary it up, I joined a message board where people share recordings of live shows. I built up a collection of dozens of shows for every tour they did from 1970 to 1996. That was my way of keeping things familiar yet fresh, I guess. I watched the same shows on TV, I never left my familiar environment unless I had to, etc.

Now all of a sudden I’m listening to genres of music I never enjoyed before, I’m appreciating art like I never have before, I’m coming up with all these off-the-wall, creative ideas… it’s not just the fact that I was enjoying these things for the first time ever, it’s also the fact that I spent most of my life apart from these things. EVERYTHING was new to me! When I started travelling, even driving 45 minutes away was an adventure because I avoided even leaving my bed for so many years.

Sounds great right? Well, I had to learn to reel myself in so I didn’t seem too crazy in public. Of course I always noticed pretty girls before, but now they were absolutely breathtaking. I needed to either keep quiet or figure out how to give compliments in a way that didn’t come off like “HEY, I WANT TO FUCK YOUR BRAINS OUT WHILE WE LISTEN TO RAGTIME PIANO.” I also needed to always remember that although I might really enjoy something, it doesn’t mean my friends that aren’t on meds that flood their brain with happy chemicals will feel the same way. I can’t go around telling people “Hey, this song is amazing and you need to listen to it right now!” or “Hey, I’m going to drag you to a wrestling show with lots of people, bright lights, and loud music.” I always need to keep my previous mental state in mind so I don’t forget that a lot of people simply like to do what’s comfortable.

[honk]

I started this journey in 2014 when I gave my brain a rest, then started finding the ideal meds for my brain in late 2015. It’s now halfway through 2019 as I write this and I still find myself making mistakes from time to time. I plan the rest the next couple of days because I’m driving to New Jersey for a Horror Punk show on Sunday. I’ve sent at least two messages to friends that I’ll have to deal with tomorrow. I say “at least” because there are always things I forgot that I did until they pop up later (edit: yep, discovered another as I was proofreading). Stimulants trick you into thinking everything is really important and at the time it is… however, I’m always only 24-36 hours away from nothing being important besides uninterrupted rest.

Lastly, fun fact – due to poor sleep last night, I am in a particularly manic state as I write this. It’s difficult to sit my ass down and focus on one thing long enough to come up with a well-written, organized blog entry. It’s much easier to spam an IRC channel in a loose, stream-of-consciousness manner. However, I’m going to try and remain consistent with my blog. I’d like for my thoughts to all be in one place rather than spread across 20 different private messages and chat rooms. We’ll see how long it lasts!

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Pride Month 2019

Seeing as it’s Pride Month, I’d like to explain how my health experiences made me sympathize with what the LGBT community goes through.
ME/CFS isn’t an illness like cancer where you’re treated like a brave warrior and hero regardless of how treatable, mild, or severe your form is. You get diagnosed by ruling everything else out that could explain the symptoms (AIDS, Lupus, Lyme Disease, etc). Since there’s no test to “prove” that you’re sick, the illness isn’t taken seriously and people don’t believe that you’re suffering. The situation is a little better now, but back when I got sick in the early 2000s it was awful. Doctors and teachers treated me like some asshole that just didn’t want to come to class, a hypochrondriac, a nut, or that my symptoms were psychosomatic due to some childhood abuse. Their comments got into the heads of my parents who suspected that maybe my symptoms were due to abusing drugs. I was given no help or half-assed help at best. Only occasionally would someone sympathize with me, but it would be someone like a nurse that couldn’t do much in their position.


My stomach pain was at its worst as I struggled to attend freshman year at Apponequet. I’d get snide comments about why I wasn’t eating and was so skinny, calling me anorexic, etc. I was never one to get into fights but a lot of shoving went down that year (I wasn’t going to put up with anyone’s shit on top of everything else). The Principal noticed that I tended to be a loner in the lunchroom so she took me aside and suggested I join the Diversity Coahlition (the newly-renamed Gay/Straight Alliance). I said “I’m sick, I’m not gay!” I’m willing to guess that was her go-to response to any outsider and offered that same half-assed help to any LGBT student trying to make sense of their situation.
As a straight white guy I’ll never know what it’s like to walk a mile in the shoes of a gay man. Also, I grew up in Massachusetts: one of the most tolerant states… so I REALLY don’t know what it’s like to be a gay man growing up in places like the midwest/southern USA, or at worst strict countries in the Middle East. However, I know what it’s like to be treated like shit for something that isn’t your fault and you have zero control over. Due to that, I’ve always felt a sort of kinship with any other groups that have had to deal with the same thing.

Surrounded By A Mess

There’s one thing which Chronic Fatigue Syndrome causes that nobody ever talks about: messy rooms.

If I’m in my room, I’m in my bed. Getting up and out takes all of my effort so when I need to go somewhere, all I can do is make a beeline to the outside door. By the time I get back home from wherever I was, I’m out of energy and will do the least amount of things required of me before getting back in bed. If I went grocery shopping I’ll put the food away, but pretty much anything else I bring home ends up on the floor in my room with the understanding that it will be put into its proper place at a late date (but this date never comes).

It generally takes most of the day for me to fully “wake up.” There are things that bump me up to the next level of consciousness: the cumulative effects of each dose of my meds, socializing which gets my mind going, and generally going through my daily tasks. Sometimes I’ll be in the mood to start cleaning but by then it’s 2am and everyone else in the house is trying to sleep so I must be quiet. When I’ve finally had enough of the mess and start cleaning during daylight hours, the required motions of repeatedly bending over and lifting quickly do a number on me. It’s a similar feeling to shoveling snow.

Human beings naturally avoid activities that cause pain anyway, but surviving decades of discomfort will condition you even further. It’s not long after I start cleaning that the feelings of soreness, fatigue, shortness of breath, and sweating kick in. I’ve managed to recondition myself to get through many other of life’s tasks, but keeping my room clean remains a constant challenge.

Things On My Mind – 3/5/2018

I’ve felt like shit for over a month now. As I walk through the living room and kitchen to driveway to go somewhere, my parents sometimes greet me or ask a question but I can’t answer due to the fatigue. I feel like I’m out of breath and can’t get enough oxygen. I suspect this is due to 3 factors: the fact that I’m more active than ever before, nagging sleep apnea symptoms disrupting my sleep, and tolerance to Adderall building up once again. I’ve since I can’t always get things done at home (as explained in my “Environment” article), I’ve taken my ME/CFS books to the library to consider my options.

Regarding those 3 factors:

The biggest problem for me with regard to being active in hobbies and business is that the more I do, the more I have to do and the more I want to do. For example, despite feeling shitty lately I’ve increased my eBay earnings due to some new strategies and effort I’ve put into it. Buyers don’t wait for me to catch up on sleep, when they click that “Buy It Now” button I need to get that stuff packaged and shipped out. In addition to my personal eBay sales, I’m also helping a local music store sell some of their stuff online which is even more complicated. I need to always keep my eyes on things to respond to questions very quickly and communicate with the store owner to make a deal. I then need to get my ass to the music store, package up that big guitar, work with one of the guys that works there to print out a UPS label for me, and then I go drop it off. For my personal eBay sales I can wait a day or two if I really need to, but when guitars in the 4-6 figures are being purchased from a legitimate 35-year business I need to get the job regardless of how sick I am or if I’m off my meds.

As far as sleep apnea goes, I was disappointed to see symptoms return after losing weight. At my heaviest I was nearly 240lbs. I started tracking my foods last year to drop weight after struggling with a CPAP machine. When I got my weight down to about 205lbs, I suddenly (literally overnight) stopped waking up and slept through the entire night. I thought that was it – I’d heard that weight loss was a “cure” for sleep apnea. Unfortunately, symptoms returned. I spent sometime reading about sleep apnea and its causes and learned that while weight loss will improve symptoms, it doesn’t necessarily cure them. I’ve been about 190lbs for a while now and just started the process of tracking my foods again. I’ve read that even 10lbs can make a difference when it comes to sleep apnea symptoms (and blood pressure, too) so I’m hoping that will do the trick. I don’t understand why I slept fine for weeks at 205lbs before symptoms returned, though. I need to read more about sleep apnea if things don’t improve because I really don’t want to do another sleep study and bother with a CPAP again. Some people are cured by strapping something to their back which forces them to sleep on their side (I already sleep on my side), some cured their symptoms with weight loss, some find relief with a CPAP, and others are cured via surgery.

Regarding the last one, Adderall tolerance, this one’s tough. When the brain has become tolerant to stimulants like amphetamines and you spend some time without the drug, the next time you resume using, tolerance will occur much more rapidly. It’s difficult to tell how often I can use Adderall and get away with it. I’ve been generally following a 5-day schedule for a few months now (Adderall on the weekdays, rest up on the weekends) and this might be pushing it unfortunately. Like I said earlier, the more I do the more I want/need to do so it’s very difficult to take a break and say “I’ve got all these things I want to do and people to talk to, but instead I’m going to lay in bed all day without being able to think.” It needs to be done an I’m ok with taking a couple days off per week when I have no plans, but there are times where I have to decide if I want to risk a 6-day week to participate in something. Last year I spent over a month researching and then trying a peptide called BPC-157 (I should write an article on this) which may be able to repair damaged dopamine receptors but I did not notice a significant improvement. This could be due to the fact that those that see improvement are generally former addicts to meth and other amphetamines and no longer use the drug. The only other way to lower tolerance is to spend a significant amount of time away from the drug (months) so if things get too bad I’ll have to spend some time away from Adderall again. After the crash which occurs over the first few days I wind up in a state where I don’t have much energy and can’t think, but I could go through the motions of packaging up my eBay sales and shipping them out. I’d also have to figure out arrangements for the weekly open mic livestream I’m responsible for running.

There’s my current situation. The meds I’m on got me to where I am now which is great and more than anything I ever thought was possible… but I’ll need to discover some new things if I’m going to get to where I want to be.

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Where Did This Blog’s Name Come From?

If you asked 100 people who Black Sabbath’s singer was, most of them would say Ozzy Osbourne. That’s true, he was their singer… but he was only their first singer! In 1979, Black Sabbath fired Ozzy and continued on with other singers including Ronnie James Dio (Rainbow, Dio), Ian Gillan (Deep Purple), Ray Gillen (Badlands), Glenn Hughes (Trapeze, Deep Purple) and Tony Martin. The latter name is the one people generally know the least about, but was actually Sabbath’s singer for the longest amount of time, beating out Ozzy by a couple of years. I’ve always been very fond of Sabbath’s later years and actually prefer those albums!

In 1995, Black Sabbath was in talks with Ozzy about a reunion but there was a big problem – they were still obligated to release another album. They quickly threw together an album to get out of their contract with the IRS Records label. The album was titled Forbidden. This is by far Black Sabbath’s least critically acclaimed album and is generally panned by critics. It is certainly odd! Would you believe it actually features Ice T rapping on a song? Yep, this is the first and only case of a guest singer on a Black Sabbath album.

The best song on this album, by far, is the final track: Kiss of Death. This was a very strong way to finish off Sabbath’s studio catalogue and it indeed looked like it was going to be their final chapter until their reunions with Dio (as Heaven and Hell) and Ozzy.

Overall, I enjoy Forbidden… but we’re here to talk about the song that gave this blog its name.

This song starts out with a very repetitive riff in 4/3 time signature. Honestly, the vocal melody is a poor example of what Tony Martin can contribute as a singer. His vocals follow the melody of the guitar the same way Ozzy did in Sabbath’s classic songs N.I.B. and Iron Man, but the melody is far less catchy in this case. However, at 1:28 Tony Iommi plays a riff that’s much more appealing to the ear. As a matter of fact, I enjoyed this riff so much when I first heard it that I ripped it off in some of my earliest basement recordings.

I didn’t name this blog after the song’s guitar riffs though. When I decided to create this blog I didn’t spend much time brainstorming or wavering back and forth between several choices – this name came to me immediately and I stuck with it. In addition to the title, many of the lyrics apply to this topic.

Is life everything you want to be?
Does it give you everything that you need?
Does it live up to your expectations?
Are you ready for the celebrations?

This is not for the weak of mind,
Are you sure that you’re my kind,
Do you want to be part of me,
Are you sure that you can really see.

Are you chained to a life that you don’t want?
Is it hard for you to find a way out?
Can you live without the love that you need?
Are you sure that what you have is so real?

This is not for the weak of mind,
Are you sure that you’re my kind,
Do you want to be part of me,
Are you sure that you can really see.

All of your life, they try to take your cover,
Turn you into another, and make you change your name.
When you fall, it’s up to you to recover,
You can’t depend on another, to help you with the pain, yeah.

I’m shaking off the chains, I’m shaking off the chains.

This is not for the weak of mind,
Are you sure that you’re my kind,
Do you want to be part of me,
Are you sure that you can really see.

In the night, you say that are falling
People always calling, calling out your name.
What do you know, a face appears at the window,
Tapping on the window, the window of your soul.

I’m shaking off the chains,
I’m tired of all the pain.
I’m shaking off the chains,
Let me live again!

I’m Shaking off the Chains!

 

Music

When given a choice during my sickest years, I would always choose whichever option was most familiar to me. New experiences take effort whether it’s becoming familiar with the characters in a new TV show, navigating a different route to a destination, or trying a new recipe. I didn’t have the brain power for any new information to stick, so I stuck with what I knew – and this also applied to music.

There was a stretch of several years where I only listened to one band: Black Sabbath. You might think that’s a pretty small group of song to pick from but it gets even better: I only listed to the 1980-1996 era of Black Sabbath. I’ve always had a preference for their rarely-celebrated later years for some reason. When Ozzy Osbourne was fired in 1979, Ronnie James Dio took over for a bit, then there were a few unstable years before Tony Martin finally gave the band some stability as he remained singer for their final decade of existence.

did shake thing up from time to time… sort of. I rarely listened to the studio albums. I instead listened to live performances after discovering places online where they could be downloaded. These came from several sources of varying quality: soundboard recordings that were broadcast over the radio or TV, high-quality audience recording, and barely listenable garbage. There were dozens of recordings available for each tour with usually at least one high-quality recording. This allowed me to change things up from time to time without leaving my comfort zone.

Music was part of my nightly routine during these years. I would take my sleep meds on an empty stomach, have something to eat, then once I felt drowsy enough I’d pop a CD-R into my nearby stereo and listen on a low volume until I fell asleep. Music wasn’t really something to enjoy during this time of my life, it was just something to fill the silence.


My enjoyment of music and the desire to explore new songs had a brief boost in my early 20s. There was a period of about three years or so at this time of my life where I would drink alcohol as often as it was available to me. By then the Adderall wasn’t working as well and I had constant muscle pain from years of trying to live like a healthy person. Alcohol was great at numbing the physical pain, allowing me to get through physical activity from standing up through a concert to sex. What I enjoyed most about booze though were its psychological effects.

Stimulants make you cold and unfeeling but when I drank I was able to feel. I could laugh, cry, become angry, passionate, etc. It didn’t matter if they were positive or negative emotions – feeling anything at all made me feel like a human being for once.

Getting drunk was my way of self-medicating before I understood the science of how and why I enjoyed it. Have you ever had a few drinks (or more) and really enjoyed a song? Picture the stereotypical drunk girl at a party, what is she doing? She’s up on the table dancing her ass off telling everyone around her “THIS IS MY SONG!” What about the booze causes this effect?

The neurotransmitter GABA is partially responsible. Altering the amount of GABA floating around in the brain will dramatically alter the way a person feels. Prescription drugs that increase the amount of GABA in the brain are used to treat insomnia (Restoril, Halcion), anxiety (Xanax, Valium) and used as muscle relaxers (Lyrica, Baclofen). Alcohol also (indirectly) increases the amount of GABA in the brain. That, combined with its short-term effects on other neurotransmitters like dopamine, makes music sound great.


I stopped drinking years ago when the aftermath stopped being worth the couple hours of pleasure, and spent the next couple of years finding myself listening to Black Sabbath live shows again.

I stopped using Adderall for most of 2014 which allowed my brain to bounce back slightly. As long as I didn’t take it every day anymore, it was one again providing me some energy and flooding my brain with dopamine. A year or two later I discovered Baclofen which increases the amount of GABA in the brain and noticed something interesting: Music sounded better than it ever has before! This feeling was similar to but very different than the way I enjoyed music with alcohol and fortunately a lot better.

The first time noticed this, the first time I really felt music in a long time, was when I heard the song “Arizona” by the Scorpions:

My favorite part of this song is the guitar lick that happens shortly after 1:05. I can’t describe the feeling this song gave me with words beyond saying it was euphoric and I was nearly brought to tears. I make the alcohol comparison because I imagine that’s the closest feeling most people have had to get them to relate to this, but it this was a truly different and better experience.

I frequently got sidetracked for hours when a good song would become more important than whatever I was trying to achieve at the time. I revisited old favorites, bands I discovered in my teens but hadn’t listened to since. I explored new bands in my usual genres of hard rock and metal. What surprised me most though was that I found myself enjoying genres I never explored before!

I moved from rock, to pop, to funk, to jazz, to classical, to ragtime piano. Each time I discovered something new, I would branch off in several different directions and couldn’t keep up with myself.

Home listening is just one part of the music experience. I plan to write about attending live music in the audience as well as performing live music myself in the future.


Tchaikovsky’s 1812 Overture is so badass it has a cannon in it (at 5:00)


I saw P-Funk live last year and it was incredible.


Everyone knows this one, but I didn’t appreciate it until recently.


For whatever reason I enjoy songs about paranoia, so the “Are we under their control?” line really works for me.

Things On My Mind – 1/26/2018

We’re a few weeks into 2018 and the things I’ve done so far are incredible, but it has come at a price and I don’t know if this level of activity is sustainable.

When 2017 started I thought I was ready to crank things up to the next level. I had things I wanted to do, ideas… I wanted to finally take a shot at stand up comedy, play music at different venues, start writing in a regular and organized manner, look for part-time work, and many other things. I still had a pretty good year, but I had to postpone a lot of those goals when some health setbacks occurred. One year later in 2018, I’ve gotten those issues under control and am armed with more knowledge and tools in my arsenal to take that next step forward. I’m almost where I wanted to be last year.

All the things I listed above, I’ve been doing. I’ve been having a lot of new experiences in new places with new people, and with new peo ple comes new opportunities. I have some exciting plans later in the year that have given me that kick in the ass to get to the gym to try and get my body – a body that still spends many hours a day laying in bed in front of a laptop – in better shape. Every day I get up, head to the post office to ship out my latest eBay sales, work on some wild mild music idea (like trying to figure out which genre of music I’m going to play drums over a medley of next), do some cardio and lift weights, meet with friends, and discuss plans.

It’s really taking a toll on my body. For the last few months, I’ve been able to maintain a Mon-Fri schedule, and sleep through the weekends to rest up. At first, I would start getting pretty tired by Friday… then Thursday became difficult too… and now this week, I was already feeling exhausted on Tuesday. The symptoms of exhaustion have been nearly constant, and as soon as things start wearing off around 9pm-11pm I have a couple of choices: take more meds, or drive home before the dizziness gets worse and interferes with doing so safely. There have been a couple occasions so far this year that it gets to the point where extra meds don’t even help and all I can do is lay in bed. This would be fine if I could just sleep it off, but I can’t sleep well until these meds get out of my system.

I didn’t start this blog to bitch about fatigue, you can find that in plenty of other places on the internet. The exhaustion I’ve been feeling is a positive thing, it’s the result of doing so much. I can live with the daily fatigue and there are ways I can distract myself from it. Staying engaged socially helps a lot – I might be tired but I can remain in a good mood if I’m in the right company. My worry though is that I constantly feel like I’m tiptoeing on the edge, that hour I’m just a decision or two away from rendering myself unable to stand up or drive home.

One thing has remained a constant during the last few years… if I have a symptom that’s really bothering me or I’m not happy with the way I’m feeling, I can figure something out if I set my mind to it.

Next week, I’m going hunting for answers.

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