some sort of discrimination

I keep silent about certain topics because I am afraid the wrong people will read them. Or because of the social stigma. Or because I do not want to come off as an over-privileged-CIS-white-male who is just complaining because “people don’t get me” or whatever. This is that topic.

As I have bitched about on my social media accounts, and on this very blog, I am epileptic. I am so because of brain damage I received during the attempts to keep me alive. It is more of a nuisance than anything else. I am on meds, which without life becomes a series of snapshots as I pass out unexpectedly and lose about an hour at a time.

So, why do I bring this up?

My father is convinced that my seizures are brought on by poor diet. Yes, poor diet can cause seizures, but they are acute. By that, I mean they limit (if not go away entirely) once your diet corrects itself or you correct your diet. If that is all it takes to fix my brain, I would fix everything I could.

No, my seizures are due to scarring on my brain stem. This was pointed out to me during an EEG test where they examined what happened when I locked up in a controlled environment. Kind of scary in hind sight, but what’s done is done.

So, again: why bring this up?

I am basically bullied and mocked by my father who claims that my reasoning for my seizures is my doing. He claims that I should be able to recover, and there is no medical line of inquiry to back this claim of mine up. Except for that EEG, but that doesn’t count because he wasn’t in the room when it was administered.

My point is that if someone says that a thing is happening to them which you KNOW is happening to them, maybe give them the benefit of the doubt. Yes, there are exceptions that can be found, but when the person is giving valid, MEDICAL reasons for their condition, maybe don’t call them a liar.

It will just make them doubt their own sense of self.

Locked In {ANEWSIN VOL. 13 — Jason Garden}

Edited by Luka Riot

“Hello?!”

George screamed into the abyss in front of him. There was an echo, but it was very distant. There was no light; George could not even see his hands in front of his face.

He had no memory of how he ended up being in this place. He was not hurt, so he was not shoved violently down a hole. There was no noticeable smell, so he could not gather hints from that sense. There was only a faint breeze that seemed to come from everywhere.

It was like he was in total sensory isolation. He tried to scream again.

“Hello!”

There was no response. He was alone.

George was not sure how long he had been in that place, but he was starting to get more and more panicked as time went on. 

He did not even have a cell phone on him to check the time. He only guessed that he would not get signal in this place to use it for other reasons.

Suddenly, murmurs. Whispers and hushed voices seemed to be carried throughout the air around him.

“Hey!” George screamed. “Who’s there? Please notice me!”

He no longer cared where he was. He just wanted, or needed, to be noticed. He was alone: trapped in a void away from everything and everyone. A simple “hello” would raise his spirits high. He would then know that he was actually part of the reality around him.

George decided to do a body check, finally. He knew that his eyes, throat, and ears were all intact. He lifted what he was sure would have been an arm, and that felt right. Torso and legs seemed to be in a working order, of sorts. He was going off of feel. There was always a chance that he was impaled and just not feeling the pain for some reason.

The voices were getting louder. Regardless of how scared he was, at least he was warm. Kind of. He was actually more apathetic towards his body temperature, but he was convinced that was because he was a decent temperature.

Suddenly, everything happened.

A feeling of disorientation. There were no motion blurs or sudden visual jolts, just a feeling of complete disassociation with his body. He watched as his eyes opened, and was immediately blinded by the light. Then, figures stood all around him, looking down with faces of excitement and joy.

He was in a hospital. He had been stuck in his head, only mildly aware that there was a world around him. He could account for about an hour, voices made him aware that it had been weeks.

George was frightened. He hurt. His back and his head felt like they had been ripped open and sewn back together several times.

He was naked, but under several sheets. He was still having a hard time figuring out exactly who was around him, but he was sure there were at least five people above him. All the people-shaped outlines looming over his face. Drops of water caressed his brow.

Where was he? Where had he been? What happened to him just before he found himself in that cave?

Slowly, he put his hand on his head.
Slowly, he sat up in bed.
Slowly, he started to lose consciousness again.

Quickly, the shadows of people ran to his aid. Quickly, a code blue was announced overhead. Quickly, he stopped feeling any sort of discomfort.

Another figure was added to the pantheon. This figure was carrying two rectangular shapes in their hands. The figure slammed their might into George, forcing the two shapes into his chest. There was a loud sound, and George felt a surge flow into his chest.

Everything then came to focus. His vision, his hearing, and his breathing all coalesced into what would be described as normal. The figures were no longer just that, they were doctors, nurses, and friends. Sadly, George saw no family in the group. That is when he started to figure out what happened.

He had fallen over in pain almost a month ago. His chest was tight, and the pain caused him to lose conciseness. He could only assume, but he felt confident in assuming that it was a heart attack. He did not dare to assume what caused it, however certain he might think that he is.

The rectangles were defibrillators. His heart had started to palpitate again, and they were used to put everything back on an appropriate rhythm. George started to wonder who or what dictated “appropriate” but was also sure that now was not the time to ask those around him.

Now, George was back. Finally, he was back. He expected an onslaught of questions, but none were asked before everyone had left the room. Now, he was left alone with just one of the figures from earlier. Now, he could tell that it was a doctor. She was probably the doctor who had been with him since moment one.

His chest still hurt, and there was a distinct smell of burnt flesh and hair in the air. Probably due to the event that saved his life. Again.

George wondered if he had ever been pronounced dead during this whole ordeal. He had died once as a younger man: he had been struck by a car and doctors were very unsure if he would pull through. To say that he would get to the age of 30 would just be irresponsible of the medical community, but to say that he had no chance was just as arrogant. To dismiss the abilities of everyone who was trying to save his life the first time was naive. George and his family took great pride in him walking out of the hospital that day.

Even George, through his clouded judgement and uncertainty as to what exactly is going on, was not sure if today would have the same outcome as before. At least that time he still had his wits about him. He could feel himself forgetting his family, friends, and sense of self.

“alive and kicking it in hamilton”

Today marks the 6 year anniversary of me posting my survival to the world. I spent about an hour trying to compose exactly how I wanted this to be presented. Though the end result seems silly and juvenile, it was calculated.

It was both disarming and abrasive. I wanted people to see that I was here, but I wanted it to be as underwhelming as it could be. Simply for the fact that I didn’t see it as a big deal. I could never know the waves that it would have created.

271 likes and 95 comments. That doesn’t even include the reactions from the 7 shares that I received. That was all from my personal FaceBook, as well. I, for lack of a better definition, was a nobody. I had friends and family, sure. That doesn’t change the surprise I felt from the outpouring of notices that I received. It would still be another year before I wrote and released my blog explaining, somewhat, what happened. This would still be four years from the release of my book going further into detail about a more in depth explanation of all the events.

Do I regret not having everything in place for the inevitable reintroduction to the world? Of course. That’s why I am classifying my book as a “mostly fiction” from now on, and have been since I was told how my timeline was warped by my parents.

To be fair: they did give me a detailed outline. They had taken extensive note for the first five months of me being in hospital. They claim they were doing it for me, but I knew it was a kind of coping mechanism at the time. If it had really been for me, it would have continued until further in my recovery. More description would have been put into names, staff, places and specialists. Regardless, they did finally give it to me to read after the book had been out for two years, and I may have had flash-backs while my eyes crept between marks of graphite and ink.

Personal side-note: I wish I just put “kicking in hamilton” as opposed to “kicking IT in hamilton”. HINDSIGHT!

Rest In Peace, my friend

I hate posting “in memorial”s on this page. I always feel like it is just me saying “PITY ME, I’M SAD!” which could not be further from the truth. I feel like this is important because of how important Krista was, to me personally, as well as a fantastic person.

I met Krista in 2008. She worked at a local video game store that my store dealt quite a lot with due to our similar stock and interest. She seemed to be a quiet girl, very knowledgeable and well versed in the world of electronic media. At the time I really did not get to know her well, and I always regretted that.

Fast forward to mid 2019. As far as I knew, I was the only person alive who contracted Viral Meningoencephalitis. I say that with absolutely no pride, as I felt alone and absolutely isolated from everyone I have ever and could ever meet. I wanted to share with someone what experiences I had, and wanted to learn from someone what to expect. As far as my limited research goes, there was no one for me to reach out to.

Shortly after my first book, You’re Not Dead, was released, my friend Michelle reached out. She wanted to get a copy to read to her friend that, as far as I knew, went through a similar ordeal. Fast forward a year, and I finally was put back in touch with Krista. It tuns out that she went through a similar thing because we had similar diagnostics. We had both confounded the medical communities with symptoms that made no sense.

For the next year, we would talk over messengers about what we went through. She, daily, reminded me that what we went through was not a competition. At the time, I was completely confused what she could mean by that. It took me several weeks to realize that, inadvertently, I was trying to compare by competing. By that, I mean that I would say “I suffered more because I went through this” while trying to see if she did something similar.

I am not proud of many things, but I am extremely proud that I had ever met Krista. I will miss her.

The Effects of Long-Term Hospital Stays

*THIS IS ALL FIRST HAND. I DON’T HAVE REFERENCES*

Now that I have the disclaimer out of the way, I am going to warn about long-term hospital stays and the effect on the mental wellbeing of the person in question.

Someone who is in hospital for any amount of time may be misdiagnosed as having depression or, in my case, brain damage. The patient can seem distant, gullible, despondent, or just all around wrong. The symptoms can include (but are not limited to) an unbalanced appetite, uncontrollable sadness, anger, sadness, and unwarranted outbursts.

To be blunt, this is not the fault of the individual OR the hospital. That person is used to life being one way, then (in some cases) literally have their independence ripped away from them. They might be used to keeping to themselves, then they have to socialize with specialists, nurses, and other patients. They might have their own regiment, now they have their day dictated to the minuet.

How does one treat them? With delicate understanding and a firm stance. You cannot bully them back to being “themselves”. You have to let them accept what’s going on around them in the hospital, and help them create new neural pathways to accept their surroundings.

Be careful when introducing new meds. Be sure everything in place is necessary. Do NOT be afraid to say that time is all they need. Last thing someone needs in time of emergency is to be on several anti-depressants when they don’t need it.

Please, if you have additional insight or know of better guidlines in how to cope with institutional stays, leave them in the comments. I am sure other people need them, and I would love some additional reading.guidelinesPlease, if you have additional insight or know of better guidlines in how to cope with institutional stays, leave them in the comments. I am sure other people need them, and I would love some additional reading.

New Month

Hi! I hope you are doing well.

I had something huge happen on the first.

I had a seizure.

It was far from a huge deal: my mother-in-law was over and she knew exactly the steps to make sure everything went well.

My fiancee did what she had to, including getting the EMS and calling my parents.

I hate this I hate this I hate this.

Now I am on pills twice a day.

They make me sleepy.

I’m Back.

Hello hello hello everybody! I hope you have been well!

I’d be lying if I said I was. Natasha and I have looked at two apartments and were thwarted both times. They asked us for co-signers. I do not think it is hard to believe that we, at pushing 30, do not have the connections and ties to make those happen. Please do not fret: we will be fine. I am just freaking out a bit.

TO ADD TO THE FREAK-OUT! I got kicked out of the programme I was in. My average was considered too low, so I was “forcibly withdrawn.” The notification e-mail was obviously computer generated and impersonal.

WHAT AM I DOING TO FIX IT? I have a life here in Hamilton. As much as I bash this city, I do really like the connections I have here. No, I have not really explored the downtown in the condition I am in, but I was planning to venture out when I had my own space to populate with everything I amass.

I signed up with Mac Wheelers officially and have a physical on Friday, May sixth. What Mac Wheelers can be described as is “a gym for people in wheelchairs.”

I am aware it is more than that. It is just easier to put it that way.

Now, I have to apologize again: this was far from the large update I had promised. I have good news, however! My grandmother opened her eyes! She is still in hospital as I write this, but it’s a start!

BREAKING NEWS May 3rd, 2016
My grandmother is officially off of the vent!

Patreon.

Bladder Issues

I honestly cannot even say that without giggling like a young child.

HI AGAIN! I wanted to talk about something I have a really hard time talking about in hopes to make myself a little bit more accepting of it, and I hope for a little bit of direction.

So, as you MIGHT have heard, I’m in a wheelchair. SURPRISE! I know! Who saw that coming? I DIGRESS.

Like I stated in my second blog, no one is one hundred percent sure of what happened, what flu I caught, or whatever. One thing that is apparent, though, is what happened shortly before I went into hospital.

My legs went weak. I was throwing up. My muscles got very stiff. My neck swelled. I stopped being able to urinate.

Please tell me someone else finds me writing that hilarious to read?!

So, the medical response to someone not emptying their bladder for days on end is to insert an indwelling catheter. Its basically a tube placed in a urethra. It connects from ones bladder to a bag. They are quite common to receive during any extended hospital stay or as a result of any surgery.

The thought behind a neurogenic bladder (that I have put together from the little bit of reading I have performed) is that the nerves controlling the bladder have given out, and the individual will have to perform intermittent catheterization for an extended time until everything comes back.

Well. Fun little side bit of information. Someone fucked up. SURPRISE!

What happened is that a little bit of dirt or plastic (would probably have been microscopic) ended up in my bladder at some point last year (2014). The result is my body encased it in a compound, probably calcium, and it resulted in a stone. The stone in question is 4.5 CM in diameter. The stone takes up about 95% of my bladder. Is that not hilarious?

LAUGH WITH ME! PLEASE!

My eventual point is that I have to go back in for surgery to have it removed, which is scheduled for August 25th. I really do want it to happen earlier, but the medical system is all kinds of messed up in Canada thanks to our great political power that currently sits in the most important seat.

SO YEAH! That’s my attempted at talking about an embarrassing thing that has happened during this whole ordeal. There are many worse things, but MOST of those will never be brought up.

OH CANADA, OUR HOME AND NATIVE LAND…

Another Update From a Friend

This blog update is brought to you by the mind of Hannah Rae. She is one of my closest friends and my guitar player. However, she states pretty well all of that in the following “few” paragraphs. It is all beautifully written and crafted with much deliberation. Enjoy.

______________________________

Mass Effect

First, some context: my memories of Jason Garden prior to his illness are vague. Like a collage of images you compile, which then makes the person. I don’t really remember “Jay”, I remember his beard; his constant black toque; a taupe, or light brown corduroy (?) jacket. I see someone reliable behind the wheel of a car making it to wherever you need him to be. I think constant presence despite distance or absence. I see the store Jay managed. If I close my eyes, Jay is behind me, to my right, crashing cymbals. Jay’s a snare and kick drum that feels like it’s glued to the bass line. Jay is steady. Jay is constant. Jay is, and Jay was, a rock.

The first phone call I received with news about Jason Garden’s uncharacteristic absence went sort of like this, “I finally found out what happened to Jay… he’s in a coma.” I was in my fifth term of film school, Jay was the primary financial backer of my short film project and he’d gone missing. There hadn’t been any phone contact. There had been no coffee visits on my weekend sojourns home to Cambridge, no endless cigarette smoking, or conversations about music, or all the movies Jay hadn’t seen. Upon receiving the news I remember cracking a joke like, “how selfish of him.” We both laughed. I remember thinking how indefinite that sounded. A coma. People wake up from those all the time. Jay can bounce back any minute. I shrugged it off. Admittedly, there was minimal thought given to Jay’s family, or Jay himself. He’d be okay. He’d have to be. My thoughts centered on how Jay’s condition would affect me. After all, I had a short film to consider financing, and the peripheral view of a band in need of Jay’s drumming.

The second phone call, maybe a week and a bit later, was completely different. “Jay’s not going to get better.” It hit like a locomotive. Gone was the rock. I remember standing because the couch I was on didn’t feel stable. I cried my guts out. I paced the apartment, from the washroom to the living room getting more Kleenex to blow my nose. Once I was coherent, I called home to Rob, a mutual friend, and gave him the news. He’d drive up from Cambridge that night, and we’d visit Jay in the hospital. I called Chance Procedure’s bass player, Stephen, and had an incredibly frank and depressing conversation in which it was decided he could come up the following day with his roommate, Dave. It was to become a two-day visiting period, which was really to be a goodbye.

What I think of when I remember that shaky time is Mass Effect the video game series. As Rob and I walked through the lobby of the Toronto Western Hospital of Neuroscience I saw people sitting in this sterile, huge-ceilinged, remotely futuristic lobby holding what I assumed were deep conversations in white chairs. Someone was announcing something I didn’t care to hear over the P.A. system. I turned and told Rob how I felt like I was in Huerta Memorial Hospital in Mass Effect 3 going to visit a fallen squad member. Amusingly, he replied, “that’s funny. I spent my afternoon battling the Collectors in Mass Effect 2, and then spent another 2 hours battling the collectors driving to Toronto.” It was levity, and all of it to really say that none of this felt real.

Before we even got to see Jay, we ran into still more people visiting him. I was struck by how many there were. I thought of myself, how my funeral would never have that many people. Selfish. I’d never met Jay’s mom or dad before. I’d only heard of some of his friends, and briefly met others. Who cared? Jay would always be around for coffee, and he’d always drive to my house if I needed him. I had no idea Jay knew so many people, and so many people thought the same thing. This event was developing the sensation of being far larger than I had previously been ready to accept. Mass Effect, indeed.

The hospital staff was allowing only small groups back to see him. When I finally got back there reality, and grim finality, sunk in. I saw him through glass first. My first thought reached for a cinematic concept, for something intelligible that could interpret a fact so foreign from how I knew Jay: I smiled nobly thinking Jay was more machine than man now. Just like Darth Vader. In my heart, however, gone was the consistency of the snare drum. He’d been replaced by a steady beep of a respirator. My thoughts, again, turned to myself. This shell before me did not resemble my memory of him at all. Where was my drummer? It was a crude mockery. Frailty transformed one of the firmest handshakes I’d ever had into this lifeless husk. Beep. Beep. Beep. Here lay my fallen squad-mate, team member, and friend, never to come along on another mission.

I didn’t stick around long. I needed air. A cigarette. I didn’t have any other pop culture references to make sense of something quickly becoming far too painful to stick around for. I got the hell out of a warm hospital room to go sit in the freezing November night to smoke my lungs to death and cry at everything for taking something special from me. I freely admit my thoughts hinged on how this affected me. Who was going to drum for Chance Procedures? Who was going to be my friend? On my way out the main doors I passed Jay’s father. Through tears I told him, “your son is one of the most amazing men I’ve ever met.” I was mad. At him, I suppose. If I’m being honest, I was mad at everything. Through shaky vocal cords, Rick Garden responded, “tell him that.” Like it would make a difference. That first time I was afraid to touch Jay. Maybe I’d make him sicker? Maybe I’d somehow, inconceivably, caused this? How selfish of me to conclude that. My first awareness of the effects of Jay’s illness was to worry about myself.

The second time we visited, Rob and I brought two of Jay’s friends, Stephen and Dave, who couldn’t otherwise have made it. I was more prepared and ready to be supportive for Stephen who was not taking it well. I remember waiting in the waiting room to go see Jay, Stephen saying to me, “you realize we don’t have a drummer anymore, right?” The effect of Jay’s coma seemed a little bigger, more visceral, more massive and all encompassing the second time around. Stephen was thinking the same thing I was. Was this the day the music died? I had this hint of hope though, “he could still pull through.” I remember we went in to see him, and it was thought it would be a nice gesture; maybe it’d wake Jay up, if they pumped a Chance Procedures song into the room while Stephen and I were present. “Weird Science”. That was unbearable. This steady human being; the rock seated behind me, drumming loudly to my right, now, this bedridden shell in front of me with tubes coming out of him. Again, I had to leave the room. Afterward, Stephen remarked how weird all of that was. How alienating it was to see Jay like that. Weird Science, indeed.

This time I made sure I did go in to see Jay. And I did talk to him. And, even through all my selfish concerns I gripped his hand. I remember this momentary thought of: is what he has contagious? Change is not swift in the heart. I was told his heart rate would travel and fluctuate if Jay was particularly moved, or a neuron fired or whatever. I looked at that heart monitor, and as I talked I never saw it fluctuate. But others had said they’d made it change, but not me. Selfish. I had this visual of Jay laying face up in a boat on a body of water. The boat was tethered to a dock I was standing on, and I was doing my best, hoping I could get him to reel himself in through sheer force of my presence and will. I don’t know if that’s an image I got from a movie, or wherever. But I remember clearly thinking despite the strong words of hopeful encouragement, “you’re not waking up, are you? You’re leaving me here.” Selfish.

Rob and I visited a few times over that period. The consensus was known; this was Jay’s last hurrah, basically. This was a wake. Recollections suddenly stormed in of things Jay had said that justified what was about to happen. Once Jay said, “I’ve completed everything save two (?) things on my bucket list.” His dad remarked, “he’s going out with a bang.” So strong, I thought. You’re about to consent to have your son’s plug pulled and you’re actually finding a silver lining? I was awestruck. I remember barely ever seeing Jay’s mom, Chris. “Where’s Chris?” She was in the chapel praying. I remember, for the first time, watching Rob disappear from the crowd. And I found him outside smoking a cigarette, and admitting he’d just called his mom and cried his eyes out. “I just needed my mommy,” he said.

I met people crying. I finally met Jay’s brother, the enigmatic “Dave”. Slowly, I started to see how Jay’s impending demise affected the world beyond myself. Sufjan Stevens’ “Casimir Pulaski Day” became the soundtrack of my life for this time. That and the steady inhale of cigarette after cigarette. My mind opened, and I felt what that songwriter had felt to some degree. Coping with an inexplicable loss. Things seemed connected. Things made some sort of broken sense, even on such shaky, inconsistent ground. I thought of how many people I’d suddenly met, and for the first time seen cry, and the world beyond myself grew as a very close friend’s life dimmed. I started thinking of what Jay’s funeral would look like. Stephen and I had discussed performing an acoustic Chance Procedures song. It was surreal. He wasn’t officially gone, yet here we were making plans to mourn him. Outward acceptance, for me, was fighting with this inward hope that Jay would pull through. But the human heart needs stability, consistency, and something solid to stand on in order to have coherence. It was more likely Jay was gone, and I should come to terms with that. That was about as stable and coherent as it was going to get.

And then I got news that Jay woke up. Seriously. Talk about subverting expectations. I’d gone home to Cambridge at the end of that school term feeling like a failure at having lost my chance to make a short film, about to go into a Christmas of heavy emotions and loss. And wham. What you think is going to happen? Doesn’t happen; the mark of a great story.

When I returned to Toronto in January it was for my final term of school, and I was met with the coldest winter I’d yet experienced. My life at this time became wholly unstable. Honestly, a lot happened, and my memory of things is hazy. I genuinely remember trekking the 5 or 6 blocks through the freezing cold to see an awakened Jay. I remember using that as my excuse to get away from an increasingly confusing and unstable situation. I was thankful for Jay, because no matter how difficult my life seemed to be, here was a person I could literally see in worse shape than I was. (No offense, Jay).

When I came home to Cambridge to stay, I believe it wasn’t long after that Jay’s recovery had made it such that he was in Cambridge Memorial Hospital. There was something so very inspiring about the fact that months prior we were preparing to bury Jay. And now I was joking with him about his poor handshaking skills. I remember a lot of sadness, for both Jay and I. It’s interesting how well I’d thought I’d known Jason Garden. Due to a rather unique set of circumstance, both Jay and I were in extremely vulnerable moments in our life. For the first time, this rock-solid drummer I’d had to muster the courage to ask to drum for my band was unable to keep his guard up. I saw Jay cry. I saw Jay admit weakness. Suddenly things were being shared between Jay and I that probably never would have otherwise have been shared. I came out as Transgender to Jay in that hospital. He was one of the first. It strikes me now how this person I’d associated with stability was teaching me how to never count on anything. How even the most stable of situations could change at any moment. It wasn’t a huge component of my decision to come out, but it helped knowing that my best friend could have died, but didn’t, and that to continuously live a lie might actually get in the way of being affected by a person, and in turn affecting them.

I can say that there was a status quo to my life before Jay fell ill. A set of constructed ideas of the world and how it worked, and thanks in no small part to Jay falling ill those got destroyed. The miracle of Jay’s recovery, watching him get carted from hospital to hospital and having constant trouble keeping up, and going to visit Jay only to see him change, and improve with each visit was astonishing. I’m sure for Jay change was not quite so extravagant or quick. For me, after Jay’s illness all was in a state of flux. My life, and Jay’s recovery. I can say emphatically that now, today, almost a year later, I know Jason Garden a lot better than I did prior to his illness. And, fortunately or unfortunately, I know myself a lot better than I did prior to his illness. In that way, Jay’s illness marks a chapter where my own personal life’s story changes in a different, unexpected direction. All the way through his recovery, no matter how dark, or sad my own life got, Jay brightened each day regardless of his ambivalence or improvement.

Prior to illness, Jay makes up a scattered, bizarre nonsensical collage of memories that add up to certain themes. Jay was my drummer. Now, Jay’s one of my best friends. That’s Mass Effect.