If you choose comfort over truth, you choose conflict. Choose peace. Choose uncomfortable truth. #PsychoCog #LoveWillSaveUs #HumanTribe
— Christopher Parker (@cparker15) September 29, 2016
Whole body is itchy, concentrated in the eyes. Starting to think my #seizures are histamine responses. Forgot to take Zyrtec this morning.
— Christopher Parker (@cparker15) September 29, 2016
People who blare their car horns in the middle of a residential neighborhood are some of the most despicable assholes on the planet.
— Christopher Parker (@cparker15) September 28, 2016
Can someone please explain to me how making a patient experiencing emergency wait two months for diagnostic tests isn't grossly negligent?
— Christopher Parker (@cparker15) September 27, 2016
I finally have a neurologist appointment... on November 30th. Fuck this life so hard. #FedUp
— Christopher Parker (@cparker15) September 27, 2016
I don't care who you are, that's funny right there. http://bit.ly/2dgjYBJ
— Christopher Parker (@cparker15) September 27, 2016
There needs to be a ridiculously easy way to discover which medical problems often get misdiagnosed for each other. Anyone? #healthcare
— Christopher Parker (@cparker15) September 27, 2016
Kept waking up gasping for air last night. It's taking deliberate effort to breathe right now. Feel jittery. #braingate #healthcare #crisis
— Christopher Parker (@cparker15) September 27, 2016
Still waiting around for calls back. I try to reach out to doctors' offices for updates, and I'm given the voicemail runaround. There are always excuses for why my results are not available. I feel like I'm being deliberately ignored by my health care providers. I'm running out of patience and motivation.
The clock's ticking. I'm running out of time. I need a definitive diagnosis and effective treatment so that I can get back to work and so that I can get my short-term disability insurance coverage... covered.
The deadline is approaching fast and I have nothing to show for any of this beyond a generic letter saying, basically, "sorry, we dunno wats rong". I can't expect my employer to wait around forever especially when this is all I have to excuse my extended absence. I certainly know that the insurance company isn't going to accept this.
They need a diagnosis, a prognosis, a return-to-work date estimate, and a list of accommodations that may be needed to be made for me at the office. I feel like I'm being asked to herd feral cats, and I can barely manage to keep myself alive.
I'm still experiencing changes to my average condition. I'm becoming increasingly lucid in emotion and in presence, and my body and my cognitive mind continue to be robbed of usefulness. The atrophy in my limbs makes even simple standing for more than a few minutes at a time unbearable. Both of my forearms are constantly sore, and the soreness is starting to creep up my biceps. My fingertips are starting to go numb and feel cold. Bending my fingers at all is becoming difficult. The tendons feel tight and weak, and the joints are sore. It feels almost as though I've completed a rigorous weightlifting program, only I'm not recovering from the DOMS.
I noticed four vibrant red petechiae on my torso today.
I stutter when I talk now. I forget what I'm saying while I'm still saying it.
I'm still experiencing changes in intracranial pressure. (The neurologists, infinite in their wisdom, insisted again and again that my sensations of pressure, tingling, and air escaping through my eustachian tubes were just psychosomatic. I just imagined it all. Bull Fucking Shit! I've been getting treated like a schizophrenia case for years and dismissed. And the trend continues through to the present, as though I'm not actually experiencing a legitimate health emergency.)
The line between what's seizure and what isn't is blurring progressively. I'm having trouble discerning the difference between the two. I don't know if my anxiety is attributable to seizure activity or if I'm anxious in response to a more legitimate stimulus.
Relief from nausea and tinnitus is a rarity now.
I forget to take my medications. Eat. Drink water. Basic biological functions. I'm aware of it happening after the fact. My cognitive processing delay feels infinite right now. But I am very coherent.
Why won't someone give me the help I need? I've been literally begging for help. To hell with pride and decorum. This is my life. I feel like it's deteriorating. Why do I feel like something's being hidden from me? Why was I disallowed from reviewing my own test results?
I was angry about all of this for a while. Now I'm starting to wonder why I even cared in the first place. When I can't even count on a neurologist to know how pain regulation works, when I legitimately know more about the nervous system than the doctors I'm entrusting with the care of my own, when I'm teaching them something new and dispelling myths about how shit works, what hope is there for me?
Am I just destined to wither away and die? I'm really starting to wonder.
12:00 PM
Just found the most likely explanation yet! Hypokalemic periodic paralysis.
1:20 PM
The forehead tingle is emanating numbness down the bridge of my nose to the tip.
The tingle behind the eyes feels like it's squeezing my front teeth (all of which are rootless) out of my skull.
2:25 PM
I'm experiencing a continuous I-have-to-sneeze feeling.
7:35 PM
I can barely talk above a whisper. Sometimes I can't even manage to convince my vocal cords to work at all.
The pain behind my eyes and forehead is sharp and even between left and right. There's an itchy feeling towards the center of my brain.
Nausea is back with a vengeance. I somehow have relief from tinnitus.
I hurt my foot and ankle while walking down the hall of the doctor's office today. I was trying to keep up with the nurse and I felt a little pop followed by a lot of pain. I have to walk ridiculously slowly now if I don't want to be injured further, apparently.
Looks like I have no choice but to see a neurologist at Tufts if I want to get any answers at all. Yeah, that Tufts. The one that dismissed me and misdiagnosed me with conversion disorder and sent me home. The one that lied about me being "sectioned". The one that insisted upon an incorrect explanation of a physical phenomenon in order to shut me up about my own symptoms. The one whose credibility is shit to me now. The one who threatened to arrest me while I was in the middle of a meltdown (hello, I am autistic and prone to panic attacks when triggered by asshole behavior). The one that treated me like a criminal for the remainder of my stay. That Tufts. How can I trust a single word the doctors at Tufts say to me now? Their credibility as an institution is severely damaged in my mind. I don't trust them, and it takes a lot to tarnish my trust. (For comparison, I still trust the people who have raped me. I have a complicated life, I guess.)
I'm not being given much of a choice, it would seem. It's either go back to Tufts and risk being illegally detained and generally treated like shit again, or I wait for a neurologist somewhere else and risk not getting an appointment soon enough--up to a year wait, I was told. (Spidey sense is tingling?)
If I'm getting sent on a fool's errand for the sake of someone else's religious beliefs, I'm going to be severely pissed off. If people think I've been difficult at all, they're in for a rude awakening. Don't fucking play games with me.
I'm experiencing a continuous I-have-to-sneeze feeling. #braingate #healthcare #crisis
— Christopher Parker (@cparker15) September 26, 2016
The tingle behind the eyes feels like it's squeezing my front teeth (all of which are rootless) out of my skull.
— Christopher Parker (@cparker15) September 26, 2016
The forehead tingle is emanating numbness down the bridge of my nose to the tip.
— Christopher Parker (@cparker15) September 26, 2016
It feels like my motor cortex and my amygdalae are being cannibalized. To what end? What is the equivalent reaction? What is its nature?
— Christopher Parker (@cparker15) September 26, 2016
Just found the most likely explanation yet! http://bit.ly/2cQ13hb
— Christopher Parker (@cparker15) September 26, 2016
Consciousness takes shape within. Pay close attention, it can be felt. Pay closer attention, it can be shaped. Pay closer attention, ☮♥☯☸.
— Christopher Parker (@cparker15) September 26, 2016
The line of threshold between seizure and non-seizure is beginning to blur. I'm having trouble discerning the difference between the two.
— Christopher Parker (@cparker15) September 26, 2016
Horus has been sniffing at the tingling spot at the center of my forehead more lately.
— Christopher Parker (@cparker15) September 25, 2016
I… http://bit.ly/2cTOe7E
Feels like my skull is widening. Contours on top of my head feel off, too. Holy longitudinal fissure, Batman! http://bit.ly/2djbieH
— Christopher Parker (@cparker15) September 25, 2016
Responding to "black lives matter" any way other than "yes they do" is like saying "no they don't" or "I don't care".
— Christopher Parker (@cparker15) September 25, 2016
#DevOps #IoT #SmartHome #HomeAutomation #AutomateAllTheThings http://bit.ly/2crIaAk
— Christopher Parker (@cparker15) September 23, 2016
Why don't racists ever think they're racist? #CognitiveDissonance #PsychoCog
— Christopher Parker (@cparker15) September 23, 2016
I keep thinking about lotus flowers and water. I've never cared about the lotus before in my life. A fresh Wikipedia session is startling.
— Christopher Parker (@cparker15) September 23, 2016
α្αុំαិααាα្αុំαឹαα ាα់α្αើααៅα្αះαិα ាαααិαុα្α។ α’ααុα។ α្αុំα្ααាα់α’្αα។
— Christopher Parker (@cparker15) September 23, 2016
Welcome to the first day of fall. Oh, what a fall it shall be!
— Christopher Parker (@cparker15) September 22, 2016
Why does it seem like everyone I know is having #seizures without even realizing it's happening?? http://bit.ly/2cp37f8 #epilepsy
— Christopher Parker (@cparker15) September 22, 2016
Containerize all the things! ✊ #Docker #DevOps #IoT #SmartHome #HomeAutomation #Hashtag
— Christopher Parker (@cparker15) September 22, 2016
Gamify life. The universe. Everything. π❤️☯️☸️π⚙️
— Christopher Parker (@cparker15) September 22, 2016
Thinking about setting up a @jenkinsci instance for #HomeAutomation to replace or augment @eventghost, @IFTTT, #Tasker. Thoughts? #DevOps
— Christopher Parker (@cparker15) September 22, 2016
So, modern smartphones have some pretty nifty compass apps, huh? ...
— Christopher Parker (@cparker15) September 22, 2016
#YoDawg, I heard you like #DevOps... http://bit.ly/2dcsGBF
— Christopher Parker (@cparker15) September 22, 2016
Do not force yourself to be present. It won't work. Instead, allow yourself to be. There is no greater tribute to our inertial beginnings.
— Christopher Parker (@cparker15) September 22, 2016
I feel like I'm being rewritten from the inside out.
— Christopher Parker (@cparker15) September 22, 2016
The tinnitus is deafening.
— Christopher Parker (@cparker15) September 22, 2016
Med Hypotheses. 2005;64(3):464-7. Meditation may predispose to epilepsy: an insight into the alteration in brain environment induced by meditation.
-National Center for Biotechnology Information, U.S. National Library of Medicine, National Institutes of Health, U.S. Department of Health and Human Services
Ever have a panic attack about there being nothing to panic about (yet)? Anxiety sucks. Migraines suck. Seizures suck. Two steps forward...
— Christopher Parker (@cparker15) September 21, 2016
Katniss Eberdeen, where are you?
— Christopher Parker (@cparker15) September 21, 2016
National Grid just stopped by and turned off the power. I convinced them to turn it back on by calling down to them from the bedroom window. I couldn't get to the door, I'm having seizures in bed at the moment.
They said I have seven days to get this settled or to get medical records faxed over to prove a medical related hardship.
I'm still past due from last summer and the winter before that when I was helping two families stay off the ground and out of the elements. Shielding people from capitalism's ruthless sting is, in my opinion, the most holy of all works. And the social return on investment pays its own dividends through other forms of currency unmatchable in monetary value.
And still, despite my good fortune in career advancement and net income, it seems that I'm in my own bind now... When I agreed to shoulder the burdens of others, I didn't even consider the aftermath or the personal ramifications. It's not in my nature. I have always agreed to help those in need to the best of my ability--beyond my ability, it would now seem. It should've been obvious to me that I'd have a habit of biting off more than I could chew in all aspects of life, not just those of gastronomic proportions.
I'm sure we'll find ways to get creative with finance in light of the new collection of challenges we face. It always seems that things have a way of working themselves out as long as I don't call it quits.
I just wish the load were a little more spread out. 😢
I'm still waiting for results from both the lead test I ordered (and had the blood drawn for) and the MRI I had. (Editorial note: I'd still like to have a mycotoxin screening done for the sake of being thorough. I have a hunch and I feel it would be irresponsible to dismiss it without follow-up.) It feels like I've been waiting my whole lifetime for the answers behind these tests that I've finally managed to communicate that I needed to have done. I know another day won't spell the end of the world for me... I hope.
8:15 PM
I'm still in shock. Today's been a day of breakthrough for me.
First...
My mother, Linda Plamondon, offered to pay off the overdue electric bill. I am overcome with relief, joy, and gratitude. A tremendous weight has been lifted from my shoulders. Thank you, mom, from the bottom of my heart.
I could not have asked for a better birthday (it's tomorrow! 🎂🎈🎊🎉) than to start a new life without a pile of debt looming overhead. (Feel free to look her up on Amazon if you have been moved by this display of generosity--she's a published author!)
Second...
I had a bout of good luck with an experiment this evening! I purposefully triggered a brain freeze during an experiment with the kids at BK (mmm Coca Cola Icee) and I was able to replicate a less severe version of the head pain that completely paralyzed me and sent me into a state of catatonia...
My suspicion of amygdalae seizures is seeming more and more likely. My MRI has ruled out diagnoses of multiple sclerosis and Parkinson's. I am grateful, and yet saddened for people who have had to live with these kinds of symptoms for years and decades. My level of respect for sufferers of such conditions has only been solidified throughout this entire ordeal.
I follow up next with a joint neurology/psychiatry team for review of findings thus far, plus evaluation of my current hypothesis.
Assuming that my hypothesis has any merit, I'm hopeful that a combination of benzodiazepine therapy plus sphenopalatine ganglion block may be what finally relieves me of my debilitating symptoms.
I'm getting so close! 💖💖💖
"Pumpkin spice" contains no pumpkin and it's not particularly spicy. You're all frauds. π
— Christopher Parker (@cparker15) September 20, 2016
I know what's happening to me! I'm experiencing the turbulent neural regeneration that I'd normally only experience during REM sleep!
— Christopher Parker (@cparker15) September 20, 2016
Holy shit! Clarity hurts like a bitch!
— Christopher Parker (@cparker15) September 20, 2016
Ten-year-old had bad nightmares, came to me crying. Said five things to him. He was calm and ready for sleep. Understanding's awesome! ❤️
— Christopher Parker (@cparker15) September 20, 2016
#HallmarkHealth treated me skeptically. #TuftsMedicalCtr detained me unwillingly. #MGH & #APS treat me with faith. Love. Love heals. ❤️
— Christopher Parker (@cparker15) September 20, 2016
I've volunteered to make "someone" at APS, my employer, my health care proxy. I did so in an email to some of the "top brass". The proposal is now in their hands.
I'm not equipped to make good health care decisions for myself anymore. And Rachel is working herself past the point of exhaustion... She needs help. She's not a bystander in any of this. Humans have limits, whether they want to acknowledge them or not. Feelings of guilt and shame are illusory motivators. Asking for help is not an admission of failure or a sign of weakness.
There do not exist people on this planet more qualified and capable to help my family through this ordeal. It's not just me who's facing a crisis, after all.
I'm in a constant state of seizure now. Not looking like it's going to improve anytime soon. 😢
I've been talking to and "comparing notes" with some friends from all walks of life. I realize I said I'd stop guessing and trying to diagnose myself, but my mind has other plans for me. This is my entire life. And, believe it or not, I actually am equipped to perform diagnostic tests on myself--thanks to the neurological benefits of regular meditation, introspection, and reflection. ... From an objective standpoint, I'm exhibiting symptoms of rapid descent into multiple sclerosis (MS).
My body, my mind, and my home are all falling apart at the seams and I feel powerless to do anything about any of it.
I feel like my intellect is the only thing left that I have going for me and for my family.
Strangely, it feels like that aspect is improving to compensate.
The fundamental nature of truth is, there is none. "Why?" is paradox--a side effect of consciousness. "How?" is the appropriate question.
— Christopher Parker (@cparker15) September 19, 2016
Car alarm across the street keeps going off intermittently. Driving me batty. π¦π¦π¦
— Christopher Parker (@cparker15) September 19, 2016
Yes! This is why I try to know as much as I can, so I know what I can reasonably expect and what is truly deviant. http://bit.ly/2ckf76D
— Christopher Parker (@cparker15) September 19, 2016
MRI's done.
I could feel the tingle and the pressure in the most extreme way when the machine was on. It filled my entire cranial cavity and extended through the base of my head, down my spine, and through my legs.
For the final phase of the MRI, I repeated my Fibonacci sequence experiment, just for the fuck of it. When I asserted my intent during the experiment, I could hear different pitches of tinnitus inside my head, with my "mind's ear".
Noteworthy: The soreness and weakness that I originally only felt in my right thumb last week has been spreading throughout both of my hands and forearms since my last major update. The seizures are basically constant now. But I'm so much more aware of them now than I've ever been before. The pain behind my eyes and forehead is back with a vengeance. I feel more capable of managing the pain and discomfort now, though.
It seems like I'm worse off right now to the casual observer based on my outward appearance. But I've never felt more encouraged and sure of anything before in my life.
MRI today. Choosing not to relieve seizure, tremor, or migraine leading up to it. Don't want to externally influence results with pharma. π
— Christopher Parker (@cparker15) September 18, 2016
I remember... everything. It's OK. The past is dead and gone. Necromancy is undignified. Life is progressive. Ever forward!
— Christopher Parker (@cparker15) September 18, 2016
"Once you are involved in bloodshed you are no longer a genuine practitioner of Islam".
The Dalai Lama condemns those who commit violence in the name of any religion while at the EU parliament. -Channel 4 News (via Facebook)
The things you are all saying about both sides of this debate are quite valid, depending upon one's perspective and resultant priorities.
What is one to do with this realization? If both sides of a duality are true, then the duality is paradoxical. Paradoxes mustn't exist, and so therefore the nature of the argument is meaningless.
This will always be an argument to be had to keep us preoccupied ad nauseam.
So...
Let's have a different conversation, if but for a shared moment.
What is the nature of that which we all share? We should discuss that.
❤️🌎🌍🌏🖐️🖖🤘✊✌️👐🤝
I remember... something. I do not know what it is yet. I do not know how to quantify or qualify it. But it is (t)here and it is loud.
— Christopher Parker (@cparker15) September 17, 2016
✊ #PardonSnowden ✊
— Christopher Parker (@cparker15) September 16, 2016
Link: What do you feel? | Epilepsy Foundation
Link: What is Agenesis of the Corpus Callosum (ACC)? - College of Education and Human Development - University of Maine
Link: Mycotoxins - National Center for Biotechnology Information, U.S. National Library of Medicine, National Institutes of Health, U.S. Department of Health & Human Services
The symptoms came on sooner and stronger this morning.
Pressure and tingling behind my face is difficult to concentrate past.
The involuntary jerking motions getting shot down my spine are back, but they've increased in intensity and have spread to other parts of my body. Involuntary movements in my arms/hands/fingers and neck/head/eyelids are the most noticeable to me.
The neuropathy in my right thumb is back.
The tinnitus is really uncomfortable.
Sensory sensitivity is increased all around.
It's harder to catch my breath than it was last time I had difficulty with it. I feel like my heart rate is probably elevated.
It's getting difficult to think of words again. I'm starting to get disoriented and confused.
I'm grateful for SwiftKey. My words you're reading now would otherwise be riddled with typos and nigh unintelligible.
I feel like I'm slipping.
It's too early to take more Excedrin Migraine, so I took some ibuprofen. Hopefully that will help some.
Daily meds now include twice daily magnesium. It's too early to take daily meds still, too.
Conveniently, the times for both happen to coincide this morning.
I hope I get definitive answers soon. PCP follow-up appointment today around noon, where I debrief and schedule my MRI.
7:50 AM
Just took daily morning meds plus Excedrin Migraine. Swallowing is more difficult than usual again.
I've realized just now that music has been randomly entering my "mind's ear" more frequently and discernibly over the past couple days when my symptoms have started to return.
Currently playing over and over again in my head? "Grandma Got Run Over By a Reindeer". The only explanation I can think of for such a strange choice is that the song was in a Family Guy episode I recently re-watched and it always sticks out in my mind whenever I hear it again due to the sheer absurdity of it. (Family Guy episodes seem to be my go-to in lieu of a security blanket. The references and the psychological/sociocultural phenomena explored by the show help me feel like I can learn to understand the many nuances of the contemporary human condition better.)
8:05 AM
I keep having to remind myself to breathe. I occasionally find myself gasping inexplicably, only to realize that I've stopped breathing (again). I keep forgetting that I keep forgetting to breathe. Yes, it feels as fucked-up as it probably sounds.
8:10 AM
Holy fuck, this is uncomfortable. It's getting unbearable again.
Nauseated somethin' fierce. (Did I use that right?)
So grateful for the love and support people have been showing me. I wouldn't be able to do this alone. I feel like these updates are becoming pointless, though. It's always more of the same now, just harder and faster. (Giggity.)
I think I'm going to conserve myself for a bit. At least until the meds kick in and my condition improves--assuming it does.
8:18 AM
Before I forget... I've just noticed that the neuropathy in my thumb corresponds with soreness in my forearm.
OK, I'm shutting up now. More if/when there's improvement.
9:50 AM
I had another update ready to post, but Android killed the Blogger process when I backgrounded it to look something up, and I hadn't saved a draft yet.
What the fuck, Google?! ಠ_ಠ
9:55 AM
I don't remember what I typed before, but I do know what I would say now if I were typing something for the first time...
Symptoms have been gradually improving for a while. I'm not sure how long. It feels like forever and no time at the same time. Yes, it feels as fucked-up as it probably sounds.
Currently stuck in my head is Ayreon's album, "The Human Equation". Yes, the entire album. I feel like I can hear every note, word, inflection, pause, breath, crescendo, decrescendo, tempo change, accidental, key signature change, everything, all at once, with clarity and without dissonance of any kind. (I've had a newfound appreciation for this work of art since I was discharged from Tufts.)
Yes, this feels as fucked-up as it probably sounds, too.
I've been awake for a little over an hour now. I'm starting to form a newfound appreciation for waking up in my own bed.
The pressure, tingling, and tinnitus have been gradually returning since I woke up.
I'm going to try repeating MGH's treatment from yesterday as closely as possible using OTC medications and supplements, plus hydration and a salty snack.
Excedrin Migraine and a magnesium supplement?
It'd be pretty fucked up if "migraine" was the source of so many of the problems I've faced for so long...
3:00 PM
I've gotten some balls rolling. Called my current PCP's office to schedule an outpatient MRI at MGH. Called MGH to start the process of obtaining an MGH PCP. They're scheduling at least four months out for new patient appointments... going to be a bit of a wait! As the adage goes, though, the best things in life are worth waiting for. I won't let impatience get the best of me anymore. It could be five days or five months; in the end, it'll all have felt the same to me, anyway.
Editorial note (09/14/2016) I was discharged to home after my symptoms improved.
LIVE on #Periscope: The Braingate Saga http://bit.ly/2caTeF9
— Christopher Parker (@cparker15) September 13, 2016
Editorial Note (09/12/2016)
I didn't take any notes directly during this day, however I did have more text-based conversations with people... this entry is composed entirely of my half of the conversations.12:14 AM
Editorial Note (09/12/2016)
Throughout the course of the day, I began the process of purchasing my new domain name--my old one is being squatted and held for ransom for $345--and setting up this blog.
I also had a chance to speak with Neurology, who told me that my scans came back normal. I asked to see the scans for myself, and when I started asking specific questions about the formations and proximities of the different brain regions, I was denied and the doctor walked away from me. Anybody who knows me knows how such rudeness gets under my skin. As she was walking away, I shouted out to her, "Get over your ego and do your job!" (She'd already been insisting for a day that the issues I was experiencing were purely psychological in nature, and she used one of her religious beliefs to justify her argument. I lost complete respect for her after that, but not before explaining to her how firewalking actually works using physics--NO BRAIN MAGIC REQUIRED!)
As the day came to a close the nurse who was assigned to my bed told +Rachel that she had to leave. If you've been following along, you may guess that she has been my best advocate during my stay at the hospital, and without her, I'd be much worse off as a result. So, naturally, I resisted. I didn't have a roommate. There was literally no reason to kick her out other than to give us a hard time. We asked why, and she said it was because I was going to have another male roommate (I'm genderfluid, mind you) and females weren't allowed to stay in male rooms overnight. I demanded to see the written policy that stated she was not permitted to stay overnight with me, in a sleeper next to my hospital bed. The nurse told us that she couldn't stay because I was going to be receiving a new male roommate. (Mind you, I'd already had two male roommates prior, and Rachel had slept next to me for two nights already without any fuss from staff.)
After a short argument about requiring a written policy, as I hadn't consented to a situation where she would have been disallowed to stay with me, the nurse left the room and returned with the nursing supervisor. The nursing supervisor was an older woman, wearing a white coat, holding a piece of paper curled up in her hands. Perfect! A written policy I never signed! The nursing supervisor was accompanied by two security guards. I said I would not be speaking to anyone with a security guard in the room. I will not succumb to scare tactics. I just wanted to read the written hospital policy.
She proceeded to tell me a different story: Having a guest spend the night would violate HIPAA policy with another patient in the room. (I had no roommate at the time.) Once again, I demanded to see the written policy. I didn't trust these people for their word; they'd already proven without a doubt that they were dishonest. I needed to read written policy with my own eyes, and I assumed that's what she was holding in her hands.
She had refused to show me anything in black and white. Instead, she gave an ultimatum: Rachel leaves now or she will be escorted out. I responded that if I stay, she says, and if she leaves, I leave with her. I was not willing to spend a night surrounded by untrustworthy people to whom I was expected to entrust not just my safety, but my life.
Then, the shit hit the fan: I wasn't permitted to leave. She said that Rachel could leave, however I could not. My response? Sure, I could. I could put on my walking boot, put on my sneaker, and hobble out of here with my cane. Easy enough.
Not so fast! If I attempted to leave, security would restrain me and put me back in my room with a detail outside my room.
That's when the panic set in. I wasn't a patient anymore. I was a prisoner. I had been passively kidnapped.
Within seconds, my panic exploded into a complete autistic meltdown. I didn't consent to anything that would have led to what essentially amounted to imprisonment! I was a grown adult! I was a sovereign human being! They had no right! They had no right to detain me!
"You cannot keep me here! You have no right! I will be packing up and hobbling out of here, and you will stay out of my way!" They wouldn't hear any of it. "You want a brawl on your hands? Stay out of my way or you will have a brawl on your hands. Who the fuck do you think you are?"
(Mind you, I'm autistic so I'm prone to say things that reflect the level of my anger, without being literal. Everyone knew this. I'm also, for all intents and purposes, a cripple. I need my cane just to shuffle to the bathroom. A baby could probably crawl faster than I can walk right now.)
The bald security guard retorted, "You do that, and you'll be sent to jail!"
Jail seemed like an upgrade from this place by now. If Tufts Medical Center isn't Hell, it's at least the gateway to Hell...
He wants to play Mr. Tough-Guy with me? He wants to try to intimidate me with his puffed-out chest and his bravado? Alright, I'll play, prick. "Shut the fuck up! I didn't ask you for your opinion. Get the fuck out of my room!"
The whole contingent later returned with a doctor from Psychiatry to finally explain to me the grounds for detaining me. Accompanied by yet another big, burly security guard standing way too close to my bed, trying his hardest to look tough and intimidating.
I was livid. I said I wouldn't be speaking with anyone until Meathead took two steps back away from me. He eventually did after I stared him down long enough. He started mouthing off at me. I responded, "I didn't ask you for your opinion." "Well, you're going to hear it anyway." "Go talk to yourself. I'm not listening."
Then we got to the actual talk. What was the real reason my health aid couldn't stay with me and make sure I wasn't neglected? I needed my closest ally by my side, and she wanted to stay by my side of her own volition. Why was I suddenly a prisoner? I'd done nothing to warrant imprisonment in the hospital. I was being kept against my will.
The psychiatrist told me that the visitor overnight policy was variable and unwritten. He downplayed the words "detained", "prisoner", and "kidnapped", however he did agree with me that I was being forced to stay at the hospital against my will. I would face jail time if I tried to leave the hospital of my own volition. He said he needed to make sure I wasn't a threat to myself or to others, so I was "sectioned" earlier in the day.
(Did they ever bother mentioning this change to me at all during the day, to give me a chance to process, adapt to, and transition into this new lack of personal freedom? Not at all. They sprung it on me as a tool of aggression. If I hadn't insisted that my wife, my advocate, my everything, stay by my side, I would have been none the wiser. They should have known better.)
Rachel did eventually leave after we had a brief discussion about remaining calm, and intentionally acknowledging that this situation is only temporary. Of course, before our important conversation about immediate strategy was finished, Big Bad Baldie kept forcefully interrupting the conversation and demanding that she leave NOW. And every time he did, I shot back at him to "shut the fuck up and stop interrupting the conversation; it's wrapping up and you're just making it take longer at this point." I pointed my finger in his face. "Stay the fuck back!"
After Rachel left, a nursing technician came back into the room and wheeled the empty patient bed belonging to my non-existent roommate out the door. I wasn't surprised. A ruse, just like everything else in this shithole.
Staff members took shifts sitting in the room with me for the remainder of the night to watch me, supposedly to make sure I wouldn't do anything destructive or try to escape the room. They stayed until Rachel returned the following morning.10:00 PM
Editorial Note (09/12/2016)
I spent the remainder of the night meditating, processing my new life, my freedom robbed from me for reasons I still don't fully understand. I started a Periscope broadcast so that friends and family could check in on me, but also so that I could have undeniable proof of anything that may or may not be done to me during the night. With the events of the past few days still swimming around in my mind, I didn't trust anybody in the hospital except for the techs and most of the nurses (the ones who didn't have bad attitudes, anyway).
Editorial note: I later discovered that it just so happens that the air pump affixed to the end of the bed, used for leg cuffs to facilitate blood flow and prevent clotting, has a 16.x-second cycle. Mystery solved!7:15 AM
Editorial note: The neurologist assured me it wasn't.11:01 AM
Editorial note: The room was too hot again.12:52 PM
Editorial note: The EEG was a complete surprise, by the way. Even though it had been scheduled the previous day, apparently nobody in the hospital felt the need to communicate this to me until the technician entered the room with the equipment in tow.2:51 PM
There is more pain inside my head in that direction nowWould an increase in intracranial pressure could cause a vessel near the surface of the skin could cause the vessel to rupture and split the skin open, if there was already a laceration on the skin to begin with?
There's less pressure inside my head
Editorial note: In retrospect, it's possible I may have scraped my ear a few days prior while removing some earwax, but it never bled until this exact moment.3:33 PM
Editorial note:
After I lay flat, the tingling and the disorientation increased, and the pain at the base of my skull gradually increased throughout the entirety of my skull, my neck, my chest, and my spine. I lay catatonic in excruciating pain for 8 hours straight with no assistance from hospital staff with a Pain Scale level soaring past what I had previously thought "10" was.
During my catatonic episode, I attempted to communicate what was happening inside my consciousness by moving my painful eyes... through a series of trial and error, +Rachel managed to find a somewhat efficient way of communicating with me in this state by using her phone keyboard positions. Knowing that I can normally touch-type, she asked me if I could concentrate through the pain enough to visualize a QWERTY keyboard in my mind. I couldn't visualize it completely, but I could form general ideas of row positionings.
Through a long and drawn-out process, we were able to type out messages very similar to the way Stephen Hawking does. I'd blink for the appropriate row number, she'd read each letter with a pause, waiting for me to shut my eyes tight to inform her that that was the correct letter.
Here are the messages I was able to convey to her while catatonic and in excruciating pain:
8:17 PM TUBE EUS AIR ESC RIGHT EAR
8:26 PM PAIN TEN HEAD CHEST NECK SPINE
8:33 PM LEGS NUMB TOUCH FAINT
8:48 PM TOES NUMB PRESS ONLY
9:13 PM PAIN BOTH EARS AIR ESC PRESS
9:19 PM EAR PRESS RELIEF PLEASE
9:32 PM MEDS MIGRAINE
 |
| Homonculus Sigil from FMA |
Editorial note: At some point during the night, I lost consciousness. When I came to again, the room was cool--cold, even!--and my core felt regulated. Rachel complained enough on my behalf to convince someone to eventually fix the room's HVAC problem.
Editorial note: +Rachel had taken me to Lawrence Memorial Hospital when I seemed incoherent and "out of it", and complained of my gradually worsening condition since my coughing fit on Monday. There was concern that I could have been experiencing a brain bleed or that I'd had a blood clot travel from one of my bedridden legs to my head. I'd since been transferred from Lawrence Memorial Hospital to Tufts Medical Center. As I was being loaded onto the stretcher at LMH, my right ear started bleeding. It's apparently only a superficial wound. The doctor at LMH who inspected it accused me of giving myself a self-inflicted wound. I was insulted, but I had no idea that this accusation would portend my experiences to come.
