THE GOOD NEWS IS…??

 FRIENDS!

Hi, I’m back. And sorry I had to give you the bad news first. Also sorry if I rambled a bit about my medication dilemma. I know I’ve probably been repetitive re: my journey on & off of psychiatric medications, but I feel like I’ve learned a lesson or two in the past 8 years and, as always, I like to share that here in the Octopuse Diery.

One thing I may have done wrong was to taper too quickly off the SSRI. I did a month-long taper & I could’ve made it 2 or 3 months. At least that’s what I would advise for anyone else who wants to try tapering off their meds. Go Slowly!

Also I should’ve not assumed that because I had all my medical needs established in Sarasota that those needs would just “transfer” to Jasper IN (or any other location). I should’ve been more proactive in securing not only a general physician, but a psychiatrist and endocrinologist. The system doesn’t just “believe” patients. Or even their medical records. Each “medical group” is a system unto itself & they want you to follow THEIR rules, not what your doctors in Sarasota advised. That was just wishful thinking on my part.

So, I’m much more clear-headed these days. My thoughts & moods have slowed down to a manageable speed, though I still have to “manage” a bit of rage & sorrow (& even a little akathisia on really bad days). But I am able to do that better than I was in Oct/Nov.

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Now let’s talk about Cannabis. I’ve used cannabis (THC) in several forms over the years. Often I was self-medicating to ease work stress, or other life-anxieties. And cannabis was MUCH friendlier than alcohol in this regard. So I, like many people, thought of THC as a “harmless drug.” Even smoking it seemed much safer than ingesting alcohol. I still believe this to be true.

But I would NOT say that cannabis/THC/marijuana is a harmless substance.

My first round of akathisia, in 2014, I now know was caused by cannabis use. 

THE GOOD NEWS IS: I didn’t get akathisia from SMOKING weed. I got it from eating it.

That’s right folks! Edibles are more dangerous than smokables or vapables. At least when it comes to getting akathisia.

From late 2011 to sometime in 2013, I used to make “green muffins.” We thought that ingesting our THC would be safer in several ways — no lung damage, and also no legal ramifications from living next door to the uncoolest neighbor ever [BRUCE (you remember him)].

And this worked out great. I forget the exact recipe I used, but each muffin had about a full joint’s worth of THC potential. So I would eat one in the morning, go to work, become high at small intervals that made the day super enjoyable, and become unhigh right about the end of the day.

After about a year of that, we moved to a new neighborhood & I stopped going into the office & worked at home. I kept making muffins & eating one each morning, but I also started smoking again. At  the end of 2013 I realized that A) I was pretty chunky around the middle from eating a muffin-a-day B) I wasn’t really getting high anymore. I could smoke & smoke & just barely get a buzz.

So my New Years resolution for 2014 was to quit smoking/eating muffins. I quit cold turkey in January and experienced some depression but nothing major. Just your usual THC withdrawals — which are fairly gentle in the scheme of things.

Unfortunately in mid-January I had a big break-up with a toxic friend who had been a source of much stress in my life for years. Breaking up with him was as drastic & violent as any romantic relationship ending. (Friend break-ups are hard, people!)

After that break-up, I started smoking again but not eating muffins. I honestly don’t remember much about early 2014. I was smoking as much as I did before I quit, but it was fine. The couple of weeks I detoxed allowed for me to feel “high” again. And we didn’t have uncool neighbors, so I felt alright about smoking. No need to add extra calories to my diet anymore.

But it was in May that I started to feel “weird.” Especially after I would smoke. I would feel anxious, smoke a bowl, and then feel even worse. That’s not how it was supposed to go.

So I quit smoking around Jun 15. Cold turkey. Just couldn’t do it anymore. It was offering no relief to what was some pretty severe anxiety in the first place. 

But as you all know (because you read my other post) things just got worse from there. The severe anxiety I was feeling was the beginnings of akathisia. The abrupt cessation of oral THC ingestion in January had reached its half-life by May. 

If you recall, akathisia happens when the offending substance is leaving your system (or is in its half-life). Ingested THC has a very long half-life. Months long, apparently.

So… 2 years of ingesting THC + abrupt cessation = 1 year of akathisia.

And that, in a nut’s hell,  is how I got akathisia for the first time.

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But I want to say a little more about the whole Cannabis/THC industry:

We were thrilled to get our “Green Cards” in the summer of 2018. There was a required visit to a medical doctor before we were able to splurge at the dispensary & I was looking forward to asking the doctor about how marijuana could help me — what amount should I smoke to ease anxiety but not add to it? What were the best strains for back pain & headaches? What were the benefits of ingesting vs. inhaling it?

Mind you, I still did not know what the hell had happened in 2014. I still thought it was some kind of nervous breakdown & that it would (probably) never happen to me again.

Our doctor’s visit turned out to be a visit with some ad guy for the medical marijuana industrial complex. He was a purveyor of fine CBD oils & was representing Dr. Grubbs. He handed us lots of pamphlets & described the difference between a sativa, an indica & a hybrid. Then he handed us our prescriptions & waved us away.

I paused & asked something medical.

He just looked at me like I was insane. “Why are you asking questions? Go! Go smoke as much weed as you want! Congratulations!”

And so we left with our pamphlets & our prescriptions & we went straight to the dispensary & loaded up on vapes, oils, capsules, cartridges, etc…etc…etc…

We were in Merry Jane heaven! We mostly stuck to vaping for the first few weeks. That was enough. Just a couple puffs would have you baked for hours! And it was supposedly all healthy & benevolent & stuff!

But there was something in the literature we received that haunted me. Even medical marijuana comes with a page of possible side effects, and the one that stood out to me was —

“Please call Dr. Grubbs if you start feeling restless or crying uncontrollably.”

That sounded scarily familiar to me. But certainly nothing like that would happen just from smoking weed? I was convinced it was totally safe. So I shoved that to the back of my brain & puffed away. 

In Oct 2018 we went to see The Breeders in Tampa & decided to avail ourselves of the capsules we had purchased at the dispensary. We had no idea how potent they would be, but we took 2 each & drank some black tea & had a magnificent concert experience!

I decided that instead of vaping through the day, I would take 1 capsule each morning. So I did that for the Fall of ’18. Then in the Winter of ’19, when my psychic safari amped up to 11, I began taking 2 capsules each morning. That was enough to take me off-planet for the time needed : ))

When the psychic safari started to wind down in Spring of ’19 I went back down to taking 1 capsule. And I continued on that regimen until the Summer of ’20, when my capsules suddenly became unavailable at the dispensary! 

This led to an involuntary detox of sorts that sent me into a pretty depressed state. I returned to vaping & even smoking flower, but remember detoxing from orally ingested THC is a long, slow process. So I felt the effects of capsule withdrawal even while I was smoking.

It also happened that in the Summer of ’20, we were experiencing a very odd, sinister, creepy dilemma in our own home. I won’t get into details, but it was one of the most trying times in our relationship.

I did not keep track of how much Tony smoked or ingested. His style was a little different from mine. He liked to have several vapes going at a time. So he would puff a sativa when he left for work, but an indica when he came home, and a hybrid on the weekends. He didn’t ingest as much as I did, he mostly inhaled.

And since he is not as prone as I am to anxiety & depression, he seemed to be having no troubles at all. We each had strains that we couldn’t tolerate. For me it was Girl Scout Cookies. Man, one bowl of that would make me so morose & suicidal. I had to avoid it at all costs. And for Tony it was Sour Diesel. I could always tell when he smoked a Diesel strain because his whole personality would change from calm & confident to insecure & agitated.

So it was obvious to me that there were some possible side effects, but only with certain strains. 

In Sept of ’20 we had an unfortunate Air Bnb guest living across the street from us. He had woken me up with his loud car muffler in the middle of the night for weeks. One night he woke me at exactly 1 a.m. and I ran out into the street in my boxer shorts & yelled at him. This started a terrible conflict which added to our stress level.

The guy with the loud car came pounding up our driveway one morning after we’d confronted him about his noise for a third or fourth time. He screamed at Tony & threatened to harm us if we ever came near his car again, then he roared away in his flatulent vehicle. We recorded it on our phones & went to the police.

But I was rattled even beyond the scope of the situation. I could barely function or think during the day, knowing the huge, loud Air Bnb stranger was looming nearby. His car was audible from a mile away & I could always hear him coming & going and it got ingrained in my ears. In my very soul.

I didn’t know if detoxing from the capsules could be causing all the extra fear & anxiety. But I did feel like I needed something to help with the unmanageable stress. So I called my doctor & we decided I should try Abilify in addition to the small dose of Gabapentin I was taking.

I had already tried some SSRIs and HATED them , so a small dose of the anti-psychotic Abilify seemed like a good alternative. And it seemed to help for a few weeks.

Then I started feeling worse. and worse. and worse. And this is the really tricky part of any medication dilemma. It is sometimes really hard to tell just what’s going on. Am I just freaking out harder because our life situation was getting more bizarre? Because the Air Bnb guy stayed on until November & kept disrupting my sleep with his farting muffler? 

Was I still suffering detox effects from the capsules? Or was I not tolerating the Abilify?

As you all know, by December of 2020 I was in full akathisia mode. It felt just like the 2014 incident, except I was much less motivated to survive it. 

While I do believe that the THC detox was a big part of my anxiety & inability to handle our life crisis, I am sure that the full blown akathisia was caused by the Abilify.

Here is one lesson I learned from the whole mess — being on multiple medications at once is often way more dangerous than being on no medications. No matter what your mental health looks like. Depression is survivable. Anxiety is manageable. Psychosis is, or should be, obvious to professionals & treatable with a minimal drug schedule. 

But start adding supplementary drugs & their side effects to the equation & you soon lose touch with exactly what you are treating.

So I lived with akathisia for the next couple months & finally after lots of desperate calls to my regular doctor & trying this or that additonal drug to “see if that helped”, she took me off the Abilify & I felt better immediately.

While I HATE that I am ONE OF THOSE people who just can’t pull themselves together, who gets all emotional over piddly shit like loud noises outside my house, while I hate my introverted, scaredy-cat, shy personality,  hate everything about how I operate in this world, my attempts to CHANGE who I am by “faking it” never resulted in anything but disappointing failure. I’ve had to learn to accept & appreciate that this is who I am.

I would LOVE to have Tony’s calm centeredness, or my mom’s outgoing personality, or my brother’s total lack of concern over what other people think of him.

Instead I have my grandmother’s mood swings. My dad’s agitated insecure personality. And I have hated myself for it for half a century. But in the 21st century we have a better grasp of what trauma does to us, that trauma is not just something that happens to combat veterans, that not everyone is neurotypical.

My grandmother most likely was bipolar, and used alcohol to medicate herself. My father probably has a touch of Asperger’s. He’s a pretty neurotic dude. And also used alcohol in abundance to treat his nerves.

My challenge now is to accept living the life I can handle. Without any medicinal or chemical assistance. Or rather with the bare minimum of that. That means a pretty boring life. Just sitting at this smart-typewriter stringing words together. Avoiding the outside world as much as possible. I have a whole lifetime of crazy experiences to draw on for any fictional, poetic or memoir-ish pursuits.

But if I am to live chemical-free, I will have to be pretty lonely. Thank Rog for the social medias, where I can socialize in writing. 

I just want to know who I am again. Am I really healed from all the traumas I uncovered in the early 2010s? Am I healed from gender dysphoria since I transitioned? Most importantly, do I have chronic akathisia, or will that eventually go away too? I can’t wait to find out.

I’ll end this long-winded revelation by saying that I am not anti-medicine. I would not have survived without some of the chemicals I’ve been prescribed. And I know that is true for so many other people. I just think we are being over-prescribed medicines that are really no safer than “recreational” drugs in the amount we are taking them. And we are staying on them for too long.

I am still PRO-marijuana. I am still thrilled that it is decriminalized, available & enjoyed by the masses (except in Indiana). But there are serious risks with medical marijuana as well as any chemical you ingest.

So…will I ever use marijuana again? Sure…someday when I’m feeling better. I will smoke it. But I will not ingest it.

Okay, folks…sorry this was such a long one. I have one more piece to write for this Akathisia Series & I’ll try to get it to you before the end of the year!

THE BAD NEWS IS...

 You can get akathisia from Cannabis. I’ll just leave it at that for now, but will expound later.

FRIENDS! Hi!! Hi!!

I’ve missed you. Have you missed me? I thought not.

Before I expound on the statement above, I wanted to brief you on my experience with getting off prescribed medications.

Let me tell you, it was not an easy process. I knew there would be bumps in the road, but I was not prepared for the size & shape of said bumps. Downhill, craterous, unpaved moonrock roads into the warzone of your own skull.

In May of 2022, I realized i was so goddamned happy & content & joyous & grateful in my life! I could barely contain all the happiness I felt. I was on top of the world!

I was also on way too many medications:

Testosterone (for gender dysphoria)

Gabapentin (for anxiety)

Cymbalta (for depression)

Seroquel (for akathisia)

Atorvastatin (for high cholesterol)

I was taking pills or injecting oils all day long. I thought, surely I don’t need ALL of this shit to live a good life.

So I made the executive decision to do a slow taper off the Cymbalta & the Seroquel. I had been advised in March 2021 to get off the Seroquel as soon as possible. I stayed on it for a year & 1/2 because I loved the sleep!!

But on Jun 1, 2022 I began to taper off the Seroquel. This was relatively easy. It was a two week taper, which is kind of fast, but I didn’t have too many side effects except insomnia for a week or two.

I gave myself a few weeks without Seroquel before I started to taper off the Cymbalta. I started around Aug 15 and knew immediately that getting off the SSRI would be more difficult. There was dizziness, nausea, and one night of vomiting in the first week. Then came about 10 days of brain zaps & shivers. These are just what they sound like — your brain literally feels cold & does a little shiver. Every few minutes. Then there would be surges of electric-shock sensations. Like lightning inside your skull.

Your brain is the original electronic device.

And that was made illustriously clear to me as I felt all my electricity going haywire for weeks. I was tempted to stop the taper & just stay on Cymbalta for the rest of my life. But I persisted. I thought…this will go away eventually. And it did. The brain shivers, the zaps, the dizziness all went away by Sept 15.

But then I was left managing mood swings that were way out of my control. Mania, rage, deep sorrow all swirling senselessly…non stop…and fast. One to the other to the other in a matter of seconds. As a Water Sign, I’m used to feeling my moods swing but this was not a normal pace, nor a normal weight of emotions. The pendulum was hitting every extreme and there was no “reasoning with it.” There was no self-talk that could’ve slowed it down or relieved it in any way. Trust me, I tried.

And I wanted so badly to just get back on the drugs and feel as happy as I did in May & June & July. But I thought…these terrible mood swings will go away eventually. You just have to be strong for a little while.

I knew I could create my own happiness. I had been doing it all my life. Fighting the horrible sadness of being human with my own tricky imagination. I wanted to be in charge of manufacturing my own solace. I knew I had that capability & just had to remember how to do it.

But friends, October & November were barely survivable. There were many occasions where I seriously thought of ending my life because the sorrow or rage were too much to bear even for 10 minutes. 

The 10 minute increment has worked for me over the years. To get through bouts of depression. To get through akathisia. Even to get sober! I used to look at the clock when I first quit drinking & tell myself “Congratulations, you’ve been sober for another  10 minutes!”

But I got tired of counting minutes. In the early a.m. hours of Nov 5, I walked to the cemetery alone with intentions of ending my life. There I conferred with the spirits for an hour or two, and decided to keep counting the minutes until I got through all this awful, unpredictable brain activity.

I was not getting the proper help from medical professionals. Their only advice — the only option they offered me — was to get back on an SSRI. It was clear they were only interested in selling me a name brand drug, and profiling me as a drug addict of course. They were not interested in “listening to my history, or hearing me as someone who had educated himself on his own mental health needs”.

After deciding to live through it, I did reach out to a few friends who had offered to help. For them I am eternally grateful. You know who you are, if you’re reading this.

So…here I am…it’s the end of November, a month that began with an ending in mind. I can confidently say that I’m feeling much better than I did even a week ago. My brain is much quieter and slower now. I have control over my thoughts & emotions that I didn’t have for the past 3 months.

I know I’m not out of the woods yet. I am on guard. The sadness and rage are my mortal enemies and I’m ready to do battle at any time of day. Waking up from sleep is the most dangerous moment of the day.

I tell you all this stuff not so you feel sorry for me, not so you can profile me as a crazy person just like the doctors do, but so that you can gauge your own experiences with Big Pharma & Corporate Medicine. 

If you are a person who is thinking of going on medication to manage feelings of depression or anxiety, look at my experience. Are you sure this is something you can’t get through without drugs? Because the drugs will help for awhile, but when you feel like maybe you can do without the drugs, you will have to go through an even worse experience than regular old depression & anxiety.

If you are a person who is currently taking a medication like Cymbalta (an SSRI, serotonin re-uptake inhibitor), do you realize how hard it will be to stop taking this medication? Do you know that many of these medications will cause akathisia if you are on them for too long, and the only thing doctors will tell you about that is that you need to switch medications? They may even tell you that your depression/anxiety/bipolar is getting worse & you will have to take medication forever.

I wanted off that runaway train. I finally feel like I am off the train, but I’m still too close to the tracks. There is relief, but I’m still very scared. My time at the cemetery on Nov 5 was a spiritual revelation that has given me strength & hope over the last few weeks. I know you all laugh at my spiritual experiences because they are unquantifiable by you, unfounded in facts that you can look up online, and unlike anything you’ve ever sought after in your life. 

But…I still say everyone should pursue the spirit realm for answers rather than the medical realm. The medical realm is there for emergencies of the body…the spirit realm is there for emergencies of the spirit. The trick is to know yourself well enough to decipher the difference.

Alright…now I’m kind of tired. I may have to expound on my opening statement another time. I promise I won’t wait 3 weeks or whatever it’s been…

Stay well, friends! Seek those spirits. I’m serious.

P.S. I forgot to mention that just by going off anti depressant/anti psychotic meds I lost 10 pounds. These drugs do make you kind of fat & unhealthy. I had much more energy — actually way too much energy for awhile — to ride my bike or sing, just more energy for daily activities as well. Then I lost even more weight.

So I was also able to stop taking my cholesterol medication. No harmful side effects felt from that.

Now I’m only on:

Testosterone (for gender dysphoria)

Gabapentin (for anxiety, too low a dose to go through those pharma withdrawals, but okay now)

If you can, read my blog Adventures in Akathisia 2014, before I expound on the cannabis/akathisia connection.

Can You Get Akathisia From Typing "aka" Too Much?

 Frienz,

The reason I had such severe akathisia, on both occasions, is because I live a pretty sedentary lifestyle. I did mention that dopamine is metabolized by inhaling great gusts of oxygen & exchanging those for full exhales of carbon dioxide, aka BREATHING!!!???  When you live an active lifestyle and do a lot of exchanging oxygen for carbon dioxide, you aren’t at too much risk of getting dopamine clots. As a writer/artist whose days are spent typing at a computer or drawing at a table…I did not have much oxygen breaking up those clots.

So not all akathisia looks like mine. If you have a very active job like landscaping or porn star, you may just feel anxious & sleepless in the middle of the night. You may feel overly caffeinated at times, but will be able to dispel all that restlessness as you work. You may or may not feel the depressive symptoms of akathisia. If you work a desk job, you may feel more anxious and jittery at work, and more depressed and restless at night. It can manifest in many different ways. It may not knock you over the head like it did me, so just pay attention to your own reaction to any medication you take.

'Juliet' was my alter ego before I was Vin. Very complicated — don't even try to understand

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SO, I’ve made some bold claims as to why I KNOW certain celebrities & school shooters died from akathisia. I stand by those claims whole-heartedly. And I will defend them for you now:

HOW I KNOW ROBIN WILLIAMS DIED FROM AKATHISIA:  more intuitively than anything else. Because RW’s suicide happened during my own worst phase of akathisia, it came with flashing warning lights. Of course, I thought at the time that it was because I was getting the same disease that RW had been diagnosed with — Lewy Body Dementia. I had no idea until recently that the reason both RW & I were feeling so horrible was not because we had Lewy Body Dementia*. I have since read commentary from his family that states they believe it was medication side-effects that were the direct cause of suicide.

*RW did have LBD, but that was not the direct cause of his suicide. 

HOW I KNOW DAVID FOSTER WALLACE DIED FROM AKATHISIA: When I read ‘Infinite Jest’ in 2017, I was absolutely bowled over by the passage in the middle of the book in which Wallace writes w/ such painful clarity about “DEPRESSION”.  

“This is exactly my 2014 experience!!!” I thought. I couldn’t have described it with any more alarming accuracy. In fact I was jealous that Wallace had captured the essence of “DEPRESSION” with his brilliantly simple metaphor. I had tried to write about it when I was going through it but I could not capture the profound horror of it.

Of course, I thought then that I had been suffering the same level of Major Depressive Disorder as David Foster Wallace. Wow, maybe depression really IS that bad, I thought.

And of course, I later found out that it was akathisia and not depression that was being described. If you google ‘David Foster Wallace akathisia’ you will find the passage from ‘Infinite Jest’ I’m referring to. 

Reports from Wallace’s girlfriend at the time of his suicide reveal that he was experiencing some pretty severe akathisia symptoms for quite awhile. Amazing that he hung on for as long as he did.

post-akathisia art 2015 (I was still calling it a *nervous breakdown*)

HOW I KNOW THAT ADAM LANZA (& ALL HIS VICTIMS) DIED FROM AKATHISIA: 

NOW PAY ATTENTION! The other two were easy. They just killed themselves. I told you akathisia looks different for everyone. Mostly it manifests as a strange combination of severe restlessness and horrific sadness. But it can also manifest in violent ways. [Is it any surprise that extreme sadness & restlessness could lead to violence?]

Now here’s the part of this story that’s going to get weird if I’m not careful how I tell it. You may or may not know that from 2017 — 2019 I went on a ‘psychic safari’ that was planned, open-ended and not focused on writing things that sounded like gibberish today but might mean something in the future. 

It started with simple automatic writing in Dec 2017, and soon it found its purpose after the Feb 2018 massacre at Marjory Stoneman Douglas school. I knew that i wanted this psychic safari to ‘show me’ what we need to do about school shootings. That’s all I knew. I wanted answers to all this deadly violence that no one seemed concerned about. [No one being Congress & the gun lobby.]

I was very focused on the guns. And I was very focused on Nikolas Cruz for much of 2018, as we all were at the time. Sometime in the summer of 2018 I started experiencing some out of character emotions (like really violent bouts of anger). And a persistent, urgent voice seemed to be emerging from the din — ‘Lambert.’ Lambert seemed to be taking direction of my psychic safari.

As the whole experience deepened and sharpened into something I can only call ’shamanistic fight club’, I hope you all were astute enough to guess that it was Adam Lanza & his mother Nancy whom I met with from Mar 27 — Apr 29, 2019 on the psychic plane. Lambert was Lanza.

Before I embarked upon my psychic safari, I was not particularly interested in school shootings; I did not have a special interest in any particular shooting or shooter (though I had read Elliot Rodgers manifesto, mostly for knowledge of the enemy]. I just knew I was tired of feeling helpless & hopeless every time I heard another report of multiple dead bodies on school property.

So…to end up in communion with these two spirits was UNEXPECTED to say the least. Frustratingly enough, I still had trouble understanding what they were trying to tell me. I remained focused on the guns.

And don’t get me wrong — the guns are bad. GUNS ARE BAD, mmmkay, and STUPID. They just are. They suck. They do kill people. They were to blame for all the school shootings just as much as the shooters & the medications involved. It is a three-pronged problem.

But I was missing one of the prongs. In an effort to keep the gun lobby from deflecting blame onto MENTAL ILLNESS, there was a big push to deflect blame right back onto the AUTOMATIC WEAPONS. And rightfully so. No civilian human being should own an automatic weapon.But I digress.

If anyone had told me that it wasn’t so much MENTAL ILLNESS that needed looking at, but the MEDICATIONS used to treat mental illness, I would’ve decried it as another distraction from the GUNS.

It took me going through it myself — experiencing the potency of these side effects — to understand that yes, this could definitely contribute to a person’s urge to commit utter destruction.

Anyway…my time in the spirit realm with the Lanzas was not easy to understand, but the dialogue we did maintain led me to believe that Adam was feeling very “strange” for months before the killings. That’s all I kept hearing “I feel strange” “I feel weird” I feel bad all over”. And in 2019, I just thought that was because he was a psychopathic school shooter. Of course he feels weird & bad.

I felt weird & bad the whole time I was communing with them. I was angry the whole time & my arms hurt really bad. Switching between spirit world & real time was a harsh transition every afternoon when Tony came home. I yelled at him a lot. I yelled at my mom. I yelled at my cat. I felt weird & bad…but it wasn’t quite the weird & bad I needed to feel to understand…

One thing I forgot to mention about my 2014-15 akathisia was…I used to RUN. I carved a path through my house & whenever I felt unbearably restless, I would RUN back & forth through my house—too embarrassed & scared to go outside—FOR HOURS. 

If I tried to run for 10 minutes right now, I would huff & puff & fall to the floor in a heap of out-of-shape exhaustion.

And I was NOT in great shape in 2014-15. As I said I was living a pretty sedate lifestyle. But I was able to run for hours at a time. Three hours was not unusual. Non stop until I could feel my dopamine clots loosen.Until I felt like I could finally sit down & think.

After communing with the Lanzas, I had more questions than answers. I went online to find some more personal stuff about Lanza. I had never had any interest whatsoever in the freaky kid with the asylum haircut who had killed all those children! I expected to find out he was a silent loner, a computer geek with no life beyond the screen.

And there was some of that — but not until later in his life. He presented pretty normally until puberty, when it seems he developed some pedophilic feelings. He also started seeing a psychologist and taking Lexapro (or Fanapt) around this time. Reports vary on which medication it was, and the fact that Lanza’s records from this psychologist were destroyed shortly after the crime is…SUPER SUSSSPICIOUS.

But the details of his life in the months before he committed the murders? Riddled with textbook akathisia. Nancy had reported many mornings Adam would spend crying for hours on the bathroom floor. He covered the windows in his bedroom with black bags & hardly ever came out of there. (I can attest to light-sensitivity during akathisia —especially light shining through windows. Unbearable.)

The only reason Adam would leave his room was to go to the local movie theatre, where he would spend HOURS playing Dance Dance Revolution in the lobby. Three — six hours was not unusual, according to employees at the theatre.

I don’t know any normally functioning human who could play DDR for 3 - 6 hours. Just like I don’t know anyone who could or would run through their house for 3 hours. When the tv says “restless legs” do you picture someone playing DDR all day or running frantically from room to room?

I don’t.

Anyway..there’s the nutshell version of why I KNOW all these famous names died from akathisia. I hope I haven’t scared you or sizzled your synapses with all this info. I hope that if you are experiencing any symptoms that resemble akathisia, you may recognize them & call your doctor, or tell someone you trust.

Hope you enjoyed this comic strip about Vin doing all of Juliet's emotional labor, while she walks away, ungrateful…isn't that the way alter egos always are? 

************

And so…if these famous people can kill themselves, and if these kids can feel so badly that they pick up weapons and shoot their peers, and it still goes unnoticed that they were all taking the same kinds of medication…

…then I have questions about the other suicides-- an alarming number of famous suicides in the last decade --

Chris Cornell, Chester Bennington, Kate Spade, Anthony Bourdain, Scott Hutchinson, Naomi Judd, et al…

and what of the other mass shooters? I remember the kid who shot up the movie theatre in Colorado was schizophrenic and had stopped taking his meds; same with the kid who shot Gabby Giffords in Arizona. Elliot Rodger took medication for awhile but stopped. So what meds was Nikolas Cruz taking; what about Ramos? What about the guy who shot up the concert in Vegas? How about the guy who shot up PULSE nightclub? I have questions!!!!!!!!! [exclamation point]

And I have questions about the people in my life —

my uncle Brett who committed suicide during the time I was separated from my family? He had Parkinson’s for several years and was on different medications — did they play a role in his “decision”?

My friend James who committed suicide in 2010? My step-cousin Diana who killed herself in 2013? My friend Jenna who killed herself in 2016?

I worry about our veterans, so many of whom are on these medications for their post war ailments. Are these meds only compounding problems that are unbearable to begin with?

In the next installment of the Akathisia Series I will share some of the more esoteric, conspiratorial things I’ve found about akathisia. And I will also share some links to interesting akathisia stories. You read them yourselves, and decide what you think about what I’ve written here today.

Adventures in Akathisia 2014

 FRIENDS,

I’m sorry to leave you hanging for so long on the Akathisia Series. It has been a busy autumn so far, and my brain is very electrically-challenged & needs lots of encouragement to FOCUS on things these days. Damage.

As you probably saw, we took a trip to our old home Bloomington, IN last week. It was a fun getaway, but it wasn’t without turbulence. I had a surprisingly visceral reaction to being back in a place I hadn’t been in 20 years. If you are old enough to subtract 20 years from your life & still land squarely in adulthood, you may understand how jarring revisiting your 20-yrs past self can be. There’s barely an ounce of cellular material left of that person, you have moved & changed in so many ways, and yet…there you still are, right in the next static realm. Memory.

20-yrs-ago me could work all day, eat and drink anything with little consequence, including more alcohol than anyone else in my social circle, go out to concerts, events, parties, drink more, go to work in the morning, write fiction and submit it to journals, spend time with people without feeling exhausted, write, write, write, work, work, work, drink, drink, drink, play, play, play…I still played music back then too. Jesus.

2022-me was handed a dose of humility, as I stumbled around campus w/ my sore back, my clumsy feet, my sober personality, my fried brain. We had to return to the hotel for lots of down time throughout the day. I couldn’t possibly eat as much as I wanted. I could not sleep. Anxiety, mania & rage mingled in the long dark hours w/ none of the coping mechanisms of home available. My mood needed constant monitoring. As it does at home. Quadri-polar.

But it was all good. That is just life now. And it’s only gonna get, uh, more change-y.

Akathisia Art July 2014

 

************* ADVENTURES IN AKATHISIA 2014***************

SO! I promised you all the story of my 2014 adventures in akathisia. I’m still not ready to tell you HOW I got akathisia, so you’re just going to have to suspend your curiosity until it’s time to reveal that portion of the series. Just accept that it was indeed a very severe & prolonged case of akathisia, and I still don’t know how I survived…

It all started on May 23, 2014. A Friday — the Friday before Memorial Day. Tony was going to come home early from work & we were going to lunch to celebrate the long weekend. But of course Tony was running late. 

In my memory, the news of Elliot Rodger’s killing spree in Santa Barbara, CA was on the TV and that’s what set me off…that’s what upset my mind so violently that my body started to vibrate like I’d drunk 10 cups of coffee…

…except that records state the killings in Santa Barbara took place on the EVENING of May 23. So…whether that was the exact thing that upset me so much, or whether it was something else, I definitely associate the onset of my 2014 akathisia w/ the Elliot Rodger story…

…all Memorial Day weekend I felt…strange…weird…bad…unpleasant…disturbing…But nothing worse than that. I downplayed it in my mind, and may have mentioned to Tony that I felt “funny”, but I kept thinking “Any moment this weird feeling will pass.” 

And it finally did…by Tuesday I was feeling back to normal. I got on with my life, but still wondered what was that weird feeling? I’d never felt anything like it before! I was so glad it had passed.

"denial sublimation suicide" 2014

In June 2014 I had more good days than bad, but I still noticed on some days that I felt “funny.” No other words to describe it yet. Like nothing I’d ever felt. And really unpleasant. 

At the end of June, I was hit with a very strong wave of this strange feeling and it really undermined everything. I knew something was wrong. Something out of my control was happening and it scared me. I lost a lot of confidence. There was a huge depression that accompanied the shakiness.

I wondered if it was the peri-menopause!

I wondered if I was having a nervous breakdown.

In July 2014, I had more bad days than good, but I was still keeping my head above water. I was determined to get to the bottom of this…get my old life back! I had shit to do! I started emailing Tony at work that I was having a rough day. I emailed my friend Brooke and told her I was in menopause and feeling really awful. I needed to stay in touch with people & let them know I was feeling “weird.”

I was scared. As July went on, things were not getting better at all. On July 26, 2014 I called a gender counselor, thinking that I was having some flare-up of gender dysphoria. This had happened to me before. I’d be cruising along in life & then suddenly feel as bad about being female as I had when I was a little kid. I knew this was not exactly what this “new feeling” was…but I knew I needed help. I secured a spot in the Transgender Support group that would meet again on Aug 9.

August 2014

On July 30, 2014 I was so depressed I felt like crying so badly but my body could not release any tears. Instead I rolled around on the couch, my back burning & aching like never before. I laid there all day, unable to cry, unable to think, unable to get comfortable in any position. 

I was tired of this new strange feeling, and I wanted to be able to turn it off with my awesome positive thinking skills. But there was no positive thought strong enough to turn that dial to off.

My days in July were spent pacing, hurting, feeling like tears were coming but they never did. I could barely write or draw, though I did. I was still shielding Tony from how bad I really felt. 

On the a.m. of Aug 5, I was sitting there drawing. Dots! I was doing dots, and I was overcome by the most horrific feelings of depression, pure sorrow, and agitated coffee nerves that I got up and wandered aimlessly around the house. When I got to the “green room” I finally fell to the floor & let out all the tears that had been building up for weeks. Screaming, crying, weeping, baby-tears! Loud, uncontrollable sobbing that I was afraid the neighbors would hear & call the police.

And those loud-ass tears continued all day long!

All the creepy-crawlies — rat, snake, worm, bee

And they happened again the next day, and the next day, and the next day…just as forceful, just as loud, for hours & hours! As soon as Tony would leave for work, the Great Sorrow would come & it would ravage me for 8 hours & usually by the time Tony came home, that wave of post-cry exhaustion would wash over me. And what a relief! The DAYS of the summer of ’14 were torture; the EVENINGS were fine. Just fine.

And thank God for that.

By August, I was more convinced that this was a test from God.

A real spiritual firewalk.

Or a delayed response to having solved my mystery in 2012? [from 2010 to 2012 I spent time writing about my life & realizing some important things I’d been in denial about; I found some hidden landmines, some buried violence & abuse…I had figured it out intellectually, but had I processed it emotionally?]

I could rack my brains all day long, but I could not figure out what was happening to me.

On Aug 9, I attended the Transgender Support Group for the first time. It was a great distraction from my state of inner torment, but I was still not sure if this was the path to a cure. I was pretty sure this feeling was not “gender dysphoria” — that was something I knew all too well.

Akathisia Art Summer 2014

I honestly don’t know how I survived Aug 2014. I think back to those 31 horrendous days and just shudder at having lived through them. A sickening feeling. A too-close memory. If you wonder why I remember all these dates so well, it’s because this little chunk of my life is so magnified in its pain. I couldn’t possibly forget. Also I have a “superior biographical memory” to begin with.

So…Aug 11, 2014. The news man tells me Robin Williams has committed suicide. Robin Williams?!! Nawww…

but, what is happening in the world? Is this somehow related to what’s happening to me? Is everyone depressed? Is everyone feeling THIS BAD, and they’re just hiding it?

I began to have an overblown concern for how my fellow man was feeling. Was everyone on the verge of suicide & I was the last one to find out? I knew Tony was not feeling bad. I knew he never felt like I was feeling. But how many people did?

I cried & cried through August. Loudly. Violently. I figured, one day I’ll be done crying & I will be back to normal. But it wasn’t just crying. There was a …PAIN… a discomfort that went right along with the tears. My chest hurt. My back hurt. It ached to cry. My body still felt jittery & nervous to the point where I wondered if I had Parkinson’s. It wasn’t just sadness. There was a physical component.

Tony knew that I was struggling with…something. I was still shielding him from HOW very awful it was. He still did not know I cried & cried all day. I was kind of embarrassed to tell him.

This akathisia art from 6-30-14 contains an image of an airplane getting hit by a missile (upside down on the dolphin's back) On 7-17-14 a Russian rocket hit a Malaysian airliner

 

On Aug 23 I saw the gender therapist alone at her office. We both agreed that what was happening to me was beyond gender dysphoria and she referred me to a psychiatrist. I called the psychiatrist right away and she gave me some date waaaay in the future that she could see me, and I just cried and said PLEASE! I’M Desperate!!

[I actually remember saying that!]

Somehow she was able to schedule me for Sep 2. 

On Aug 29, 2014 I was having the roughest day yet with my unknown condition. I could not even stand up I was crying so hard. Usually I cried & paced. On this day I was on the bathroom floor and probably could’ve decided to end my life if I hadn’t been very determined not to. I called Tony at lunchtime. I was ready for him to see what was really happening.

And though he stood there as I cried & screamed on the bathroom floor, I could not even begin to describe to him the downward journey I’d been on all summer. I knew he would never comprehend the true horror of it. But he was there, and the truth was out. He was worried. Supportive. Loving. Everything I needed him to be, and thank God for that.

Those hours between Aug 29 and Sep 2 were survived with white knuckles, lots of crying, lots of butterflies & moths swarming through my skin, lots of physical discomfort & mental anguish. Lots of bubble baths. That was all I could think of to do for “self care.”

 

June 30, 2014 Alter Egos w/ akathisia

There were no real answers for me on Sep 2. I went to the doctor. I described what had happened to me in the last 3 months. I was diagnosed with “Major Depressive Disorder” and “General Anxiety”. I did not think these were correct diagnoses, but I accepted them, and my prescriptions for Klonopin and Lexapro.

The Klonopin was very effective at relieving my symptoms. The Lexapro was dubious in all aspects.

I felt a lot better in Sep and Oct 2014, though I still cried a bunch in the day time. In Nov and Dec I felt a little worse. I cried a LOT and felt the creepy-crawlies pretty bad.

In Jan 2015 I started a new medication, Gabapentin, ditching the Lexapro & its SEXUAL SIDE EFFECTS. Early 2015 saw an improvement in overall levels of peace and physical comfort. But I still cried a lot in the day.

Spring of 2015 was going well; I still cried in the daytime, but Klonopin and Gabapentin helped. I was getting back to writing and doing stuff that had been put on hold for a year (almost).

But in June 2015 I had a huge flare-up of my symptoms. I spent much of June ’15 as I’d spent Aug of ’14. Barely holding on. And I don’t know how I did it — I wrote a lot in June 2015. I played guitar a lot. I just comforted myself with words & music.

And in July 2015 I felt better. And in August 2015 I felt even better. And in Sept 2015 I felt even BETTER. By October of 2015, I was no longer crying every day. I was writing, drawing and planning on moving into our new house.  I had an appointment with the endocrinologist to start HRT in December***. I felt like I was out of the woods!

But I was still scared. I was still mystified. What was that THING that happened to me? Was it really…depression? Nawww…even Major Depression did not seem like a big enough descriptor for that horror. Could it happen to me again? How did it happen? Why me, and not Tony? Our lives were pretty much identical — we ate drank & lived in the same environment.

I was on guard. And rightfully so.

One watercolor that survived the summer of '14

When my symptoms began again in Dec 2020, I recognized them right away. Akathisia feels like a lot of things, but nothing else feels like akathisia. If that makes sense.

And in Dec 2020 I was already in a very bad place. Life was not going as wonderfully as it had been in 2014. My will to survive was not as robust as it was in 2014.

I would say, having written this retrospective, that the 2014-15 experience with akathisia was way worse. It was longer for one thing!! No one knew what it was. I went from being super happy to being in a horror movie, so the drop was more sheer. In 2014, suicide was not an option! We’re surviving this come hell or high water!

Not so in 2021.

This is already a really long blog, but I want to mention one more thing. In the summer of 2014, in Sarasota, FL, right across town from me, a 63-yr-old man named Louis started taking an anti-depressant medication because he had just retired and was having trouble sleeping. He began having symptoms of akathisia right away, pacing, rocking back & forth, feeling more depressed than he did before taking the drugs. But no one in his immediate circle knew what was wrong. His doctors did not know how to help him. Louis committed suicide in the Spring of 2015. 

When I don’t have akathisia, I don’t cry very much. But when I heard Louis’s story on the MISSD podcast, the tears were flowing. There was someone, living in the same town at the same time, and we couldn’t reach each other. Didn’t know each other. Couldn’t talk to each other. And he didn’t make it. And I did. And how many more were there? In Sarasota alone?

Okay, we’ll end there for now. Enjoy all this wild akathisia art I found for you! At the beginning of 2014, I was all about learning how to do watercolors. I was determined to get it! But what I ended up mostly doing is throwing out my paintings, and keeping the brush pads with all their random marks & taking an ink pen & making something out of those instead. That’s how most of these arts happened. 

***yes, I stuck with the Transgender Group, and did make the decision to transition as I started feeling better in 2015