Something I Did Not Realize…

Did you know that I was to never get feeling back in my legs enough to walk at all?

This was dictated to me by a doctor before I stated my name. I had no clue who it was, but she was telling me how I am to be restricted to this accursed chair for the remainder of my life. Needless to say, I was a bit frustrated. In fact, every therapist in the room was taken back by her brash statement.

No, I cannot walk yet. Not without assistance. However, forever is a bit of a broad statement and I WILL prove it wrong.

So, yeah. I just thought I would share that bit of information. I had forgotten until my mother reminded me today (May 17, 2015). I am okay, just full of rage all over again.

I am looking for recounts of my tale so I can post them on here starting the middle of next month. So far, I have had a few people get back to me, and I am very excited to have there stories availible for the world to read. It you have something you would like to send, e-mail me at jygrdn at gmail dot com.

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Things I May Have Forgotten…

Well, I am done catching you up on the hospital visits. This has left me at a very bizarre crossroad where I am not sure where to go next…

So, for this post, I will talk about the little things that happened! There are a few that matter, and a few that did not even matter to me at the time!

I think I will start with my first public appearance after all this had happened. I went to the Ripley’s Aquarium in Toronto, Canada. It was just a hop skip and a jump from the hospital, and they offered to cover, not just me, but my mom and my brother as well! It was very cool. There were sharks going over my head at a point or two. I also got a Manta Ray cup! It is blue! :3

I digress; I was completely hooked up to machines as we ventured down the halls and bore witness to the creatures of the deep. I had oxygen tanks, my own nurse, my own doctor (ICU Specialist), I still had a trach tube to assist me in breathing. I had IV’s in both arms and had a very hard time looking to see all that was around me.

I was happy. I was finally out in the world for the first time in a very long time. My gaze was a bit fixated on viewing other people. It was almost like I could not conceive of the idea that they did not care that I had been in hospital for four months at that point. I had a hard time accepting that they did not know how close I was to death just a few weeks earlier. That was a mixed view: both a blessing and a curse. I was so happy that they may not have to deal with what I had just gone through, but I wanted some kind of recognition. This was before I was able to use my hands. I had not touched my cell phone by this point, and there was a plethora of people who assumed that I was dead.

The greatest impact from that day was the weather. Oh, how the snow accumulated. It was actually quite beautiful, especially since I was unaware that the snow had kept up for almost a month at that point. I was completely oblivious to the fact that we were in an arctic vortex and we were in the midst of the coldest weather we had seen for years. Fuck: we were colder than Mars. That is cold. I WAS IN A BED! I HAD NO IDEA! AHAHAAHAHAHAAHAHAHAHAHA

So, that was around my first memory. Some people would argue that it was a very important moment and I should hold it in higher regard. I was just so out of it at that point, I cannot express that enough.

ONTO LEAVING

Sorry that I got a bit distracted from the tale. Onto the next part: me leaving

So I was in Freeport for about two months: June and July. I had some great roommates. I had a roommate who talked to himself at every part of the day. In his defence, he was very old and very crazy. Other than the very awkward conversation that I was not privy to join at any juncture, he was very friendly. I had two other gentlemen in the room with me. One of them tried to get me to join his religion, and it was very had to bite my tongue while he regurgitated a bunch of stuff that I knew was made up or one sided. It made him happy, so I was in no position to say anything.

The heads of the rehab facility would have these discharge meetings. It was basically an appraisal of what your status is, how much more the facility can help you, and if you are worth their time. There was the Occupational Therapist, Physio Therapist, head Nurse, Director of Faculty, Home care liaison, and some other woman who I had not seen before, I had no clue her role, but everyone was afraid of angering her.

To say it was intimidating to me was a bit of an understatement. However, I was just my usual, brash self. I made references to things no one got. I said things that made everyone uncomfortable. I asked questions that had clearly never been considered before. It was fun!

The end result of the meeting was that I would be discharged from rehab, finally, and I would be discharged soon. I was rather ecstatic. My father was understandably concerned. I was given one more week to just sort out whatever it was that a 25 year old man had to sort out after being in institutions for almost a year.

Saying goodbye to people for what was likely the last time was surprisingly easy to do. I was done with hospitals for the good part of my life. I was rather content with the amount of nurses who had pushed there way into my sphere of influence. If I never got another pill or needle again, I would be okay with it.

I kept my discharge date secret for all of a couple of days. Not from patients; that would just be rude! I mean from the internet. I was in a kind of disbelief, and was waiting for life the pull the rug out from under my feet at any moment.

So, let us do a recap of where I was physically at this moment! I was in the wheelchair still. I regained my ability to talk, to move my ligaments from the waist up, and I could raise both legs to the same height. At that point, I still did not have toe movement or glasses.

Time for the more fun count: NURSES AND NEEDLES!

Nurses that I remember: 30

Needles: 100 (ish)

Doctors that I remember: 10

Nasal Gastric Tubes: 2

X-Rays: 5

CAT Scans: 5

Pills: MILLIONS

Thank you for joining me on this journey. I know I have forgotten some things and I will write the following posts regarding those as I remember them. There was a video taken May seventh of my progress, and I will post that really soon. If you have a story regarding my stays in hospital, please share. I want to get other perspectives. I want to share a lot more if there is more to share. I also want to take a moment to thank every single person who came out to see me, or thought of me through this horrible time. I cannot prove your intentions helped me at all, but I know that they were far from ignored.

I also want to thank my family for supporting my pathetic ass though all of these hardships and trials. There is absolutely nothing I can do to show how much it has all meant to me. There is nothing I can do to pay you back. Just remember that I love you and I thank you.

That does not go there…

I kept this blog without a title until it was done due to the fact that, at this point, I cannot figure out if it is going to be a rant or not.

HELLO hello hello. I have been biting my tongue for a year and I just cannot take it any further. The following post will, I hope, destroy the myths and assumptions around why I am where I am.

If you are, for some reason, offended: I AM SORRY.

The reason that I am not correcting these misinformed people in private is because the ideas run rampant and I cannot even keep up.

1) HOW LONG WERE YOU IN HOSPITAL?

Ten months. Ten, long, months.

2) DID YOU GET SICK IN ICELAND?

I went to Iceland with my brother, who I shared a bedroom with. We were rarely apart, and he did not get so much as a sniffle. So, no. I did not get sick in Iceland.

3) ARE YOU SURE? HOW CAN YOU BE SURE?

First off, I will kill you. The passenger manifest was also checked, as well as hospital records for all of Reykjavik. A good friend of mine and I actually met up in the city and had a beer. She is fine. PLEASE, FOR THE LOVE OF EVERYTHING HOLY, STOP ASKING THIS QUESTION! It is not even a fair question at this point.

4) ARE YOU IN PAIN? AND IF SO, CAN I BUY YOUR PAINKILLERS?

Oh boy, I do love this line of questioning. NO AND NO. Fuck! I actually suffered the exact opposite. I could not feel anything during a large part of this journey. Even at the worst of it, I had a headache. DO YOU WANT MY TYLONAL? Grah, I am starting to get very angry. MOVING ON

5) DO YOU NOW BELIEVE IN {insert etherial being here}?

No. I appreciate the prayers that I received, and I love each and every person who took time to say something. If you have questions about my religious experience around this, ask. I am not going to post any opinions here because that would not be fair to anyone, and especially not me. I am willing to express myself to anyone who would be open to listening. I am not going to sit through lectures about how my views are wrong, or incomplete, or whatever. Religion is supposed to bring a person perspective and comfort. If attacking my views are the only way you can feel secure in what you believe, then maybe you need to make sure you a) understand what the hell you believe in and b) actually follow the dogma and doctrine around it.

6) IF IT WAS MENINGITIS, WHY DID YOU NOT JUST FIX IT/CATCH IT EALIER?

OH GOD I LOVE THIS QUESTION! Do you really think I just let things get THIS bad without TRYING to fix it? I went to my doctor. I showed signs of a flu. I went to the hospital when my nerves were doing strange things. They did not know what was causing the encephalitis. A spinal tap was performed, it came back clear. There was no sign of viral infestation, and no sign of bacterial infestation. Meningitis can either be viral or bacterial. Since they could not find the instigator, they could not do anything. I received anti-cancer meds. I received enough antibiotics to make me glow. I have had COUNTLESS x-rays, CAT scans, needles, biopsies… The list is extensive and scary. I have two fucking other people’s worth of blood put back into me. Since I have a blood type that is stupid rare (O+), it was hit and miss whether I could get even one vial, let alone enough to live.

Okay, I need to stop. Maybe have tea and read or something.

The point of me writing all of this is that I want to dispel a large amount of myth in regards to what happened.

I hope this answered something for someone. Fuck knows it just made things more daunting for me.

BACK TO KW

After a very VERY long stay away from my stomping grounds, I finally returned to Freeport in Kitchener. This time, I was a lot stronger, a lot more coherent, and a lot more full of piss and vinegar. I was the youngest patient by twenty to sixty years, which would be rather annoying except I no longer had the piercings and I speak well enough to the elderly.

The best thing about that facility was the court. It was large and comfortable. The air was pure (a nice reprise from Hamilton) and it was summer. This, of course, meant that I was outside MOST days. Even if it was just in the shade, I made sure to breathe air instead of metal.

SERIOUSLY: FUCK HAMILTON AIR.

I really have very little to report from my stay there. They really did not know how to treat someone my age which resulted in a few HILARIOUS encounters. I taught about six people on the floor better ways to use a wheelchair. That was kind of a neat experience. I have not done any teaching of anything in so long. That fact made me very nervous about my demeanour and my expressions. I THINK I DID OKAY. NO ONE DIED!

The food there (which was amazing, by the way) was consumed breakfast/lunch/dinner in a common dining area. The person across from me had an embolism (I think) and really could not understand why I had BOTH my legs but could not walk. The lady across from me and to the left was just so bloody adorable. She had a heart attack, but was recovering fine. She would regal me with tales about how her husband and her met in WW2 and they were together until his death about two years prior. Unfortunately, I lost her phone number the day I left rehab, so I have no way of getting a hold of her to see how she is doing. I really hope she is doing okay.

BUT ENOUGH ABOUT INTERPERSONAL SHIT

So I had this OT who was mostly really good at what she would say and do. MOSTLY. She, we assume, would think out loud. I did my own thinking whenever she was around. I cannot even post it because so much of it was inappropriate gestures that do not have the similar impact in text.

For Example: she wanted me to carry around a pad of paper and a pen because that would be better to have than my cellphone. You know: To carry and whatnot. IF YOU THINK ABOUT THAT. IT MAKES NO SENSE!

I am being too harsh on the poor woman. She did assist me in transfers without boards from one surface to another, which is huge. She also got me into the Low Vision Clinic. She assumed I was all but blind, yet I rolled on out of that place with glasses one step up from reading glasses.

I do not think I have stated how angry I have been a large portion of my stays. I had a fever April 19th to the 21st which could have spawned encephalitis again. It did not, but the risk was present. I could not do this again. Always tag these updates with “dream,” but that is only because “nightmare” does not do it justice. I am sorry to go all emo on this post. I just feel as though I should let people know that this has been hell. Every person who has a disability goes through hell. Every person who has something hindering their state of being is going through, you guessed it, hell. I am not trying to lump us all together, we all have our own tale to tell. I refuse to accept anyone saying that so and so is worse off because of blah blah FUCK YOU. It all sucks.

Anyway, enough of that. I went home permanently on August First. I will post what has been going on, kind of. There is a lot of political shit and some good news and some horrible news. The next update will be me destroying assumptions people have about what happened again. I do see. I do read. I do tend to ramble on and on. BYE

Hamilton: The Awkward Continues

Please, do not be too confused. I actually had a great time in that horrible place. The nurses I saw on a regular basis were fantastic, my rooms were grand, and Physio was moving me in a preferable direction. I speak of that place in horrible terms because number 1: the air was fucking horrid and 2: I had a few friends who lived there and it bothered them to hear me say such harsh things about their home.

I mention the fact that I had several rooms the preface what I am going to complain about this update. I started in a room with Paul, which had its days of being fantastic. Paul left in April because of his progress, and I got a new roommate.

I was moved because I had what was referred to as a “vacuum” on me and it was loud as fuck. The extended lying on my back with little movement had caused a “Pressure sore” on the small of my back. It was kind of interesting. You could see my spine! It took five months to heal, but there is only a small scar that remains to this day.

Anyway.

My eventual point was that they thing I had to heal me was too loud for me to continue having a roommate, and I got a room to myself. The irony, to me, was grand because the machine was removed shortly after my seclusion. It was still very nice to have a life in some sort of solitude, not that I had a bad time.

After a month in the room by myself, and after three months of being in Hamilton, I was moved to a room on the Acquired Brain Injury floor. My roommate was named Derek and he was from KW.

He had a tragic tale, pretty well everyone I met did, but I digress. All you need to know was that he was a great guy, broke his leg in a car accident, and lost a good portion of his personality.

The Acquired Brain Injury (hereby known as ABI) floor was bizarre. It specialized in the recovery of cognitive issues from a trauma to the brain. I did not quite belong there, so I had a very hard time getting accustomed to my surroundings.

The other patients were very nice, and a fair number of them became friends very quickly. The staff and I got along, when we would interact. The nice thing about my location was I was only up one floor. My window had the same view, my friends from the other ward were close by, and I stayed where I was for Physio.

I cannot really go anywhere else with my description: I was only there for a couple of weeks, and I was physically in this weird valley where I just needed a little help, but more than a non-nurse could offer. I was quickly getting sick of hospital, and quickly wanting to see my friends and coworkers.
Well, the next update will finish the rehab stays. Thank you for supporting this project. It has been therapeutic and good practice. Also, thank you for coming along for the site switch.

Part Two of Hamilton. AKA: Fuck This Place.

I really did have very polarizing opinions of that hospital, and rehab, and never shied away from sharing it. The food was just as bad as the coffee, everyone treated me like how they ASSUMED that I would be, and I was very lonely.

To clarify what I meant as “how they thought I should have been” is that the nurses, and therapists, all did not know what to do with me. Some assumed that I was in some sort of horrible accident that resulted in me NEVER recovering, others thought I suffered major mental impairments that I will never recover from, and some decided to try to know me. It was rather disconcerting at times. Some nurses would assume that I did not have feeling and violently move me or do something like placing a box on my legs. This was, of course, the only example that I feel comfortable talking about in a public forum.

I have had repeated issues with the people in the occupational therapy field. They are the ones who assumed that I have major psychological issues based on the fact that I thought differently? Or something. I ask what they were basing their opinions and they would indicate how strange it was that I was polite, and they found it bizarre for someone of my demographic or something? I am sorry I sound vague. I really am and was perplexed by this way of thinking. I do understand: my diagnosis was bleak where my brain was concerned. I knew that I was coming along beautifully in that regard.

There were five nurses in particular who I will always remember. One reminded me of a friend I had in high school. She was so similar, in fact, this lead to me calling her the wrong name. One was a kindred when it came to things nerdy. We bonded over strange internet quotes and our warped outlook on social normalities. One was actually married to a fellow musician from the KW region. She was completely understanding and beautifully harsh. She was really the one who pushed me towards doing things again, like dressing myself and asserting myself. If you could not tell, we had a great relationship. The other two, I will bundle because I feel like I dwelled enough on this topic. They were the two that made every day worth living because they were so kind and loving. The one mothered me, in a good way. The other was just the softest and kindest person I have ever met.

The physio therapists were all fantastic. I had one student that I got along with particularly well.

My mind always goes back to the support from the fantastic people from SCIO. They took me into their organization and treated me like a kindred. I can remember having long conversations with various members of the staff at the Hamilton location. Melanie is acting as an ongoing liaison (or unofficial social worker) for me, which is fantastic. She is the only staff of any location who has actually kept up with me for any length of time. She has been my voice and my opinion on things I do not have much say in or for things that I did not know existed before recently.

I just want to say at this point that I was not asked or payed by SCIO or anyone who works for that fine organization. I do not work for them, either.

From Third Hand To First

Realistically, my memories start a year ago or so. My first memories (“Damn, I want that water. Why can’t I move my legs? Or speak?”) were in the distant past, and I just spent that month or so in bed or rolling around in the hospital wheelchair.

Soon after I regained some level of consciousness in Toronto, I left my new place of residence for Freeport in Kitchener, Ontario. I do not have many positive things to say in response to my arrangements. Arm movement was limited and painful, speaking was just a series of blinks, and it was apparent that walking was going to be a long time in the making. Luckily, my parents were by my side through a lot of what just transpired and helped me through some of the toughest parts that I have had to deal with.

Hamilton was quite the refreshing experience. I moved my arms independently for the first time March, 2014. Before that, I really relied on everyone else around me for feeding, washing, and the like. Hamilton was not the first place that I got physio, but it was the first place where they expected me to be able to do things by myself. My regiment involved bicep curls, dexterity exercises, cardio expressions and other bits of physical expression. My arms came back early in my admittance, and the muscle started coming back as I progressed.

My roommate initially was this energetic Brit named Paul. He kind of took me under his wing very quickly and his friendship will hopefully be long lasting. His guidance and brotherhood was instrumental in my improvements. He hurt himself doing labour around the house and required surgery to repair the nerve fibres in his spinal chord. This left him in a wheelchair. His wife, Mary, would come everyday before she started work and would bring Paul and I a coffee. I will not lie: It did more than anyone could imagine.

The coffee in Hamilton was delivered in frozen blocks that were then thawed for the patience. It was, and realize that I am not exaggerating this, the WORST anything I have ever ingested in my entire life, and I have survived coffee from Iceland. Seriously: What were they thinking?

Anyway, I promise I will not meander around the horrible coffee any longer. HOWEVER, if it comes up naturally, I WILL EXPRESS HOW HORRIBLE THAT WAS! You have been warned.

So like I was saying, Paul and his wife, Mary, were friends when I needed someone. Around this time was the first updates to be posted so social media. It was interesting, I had a few hundred RIP’s that I had to sort through. I found this a weird combination of humbling, and hilarious. I got to see the results of a kind of internet funeral, and the subject was me. So, I posted what I considered both morbid and hilarious:

“Alive and kicking in Hamilton.”

There was quite the ruckus made for such a simple statement, and this added to my morbid pleasure.

I would like to take this moment to thank every single person who saw me up to this point. Even if you just saw me once, and I did not respond. Your presence was appreciated greatly by not just me, but my family.

In response to those who had either assumed or heard that I had passed: That is hilarious. I do not blame anyone, and I am far from angered. I am actually honoured that anyone cared and greatly overwhelmed by the community outpour that occurred. I am not going to lie, I actually find it tremendously funny. I get it, there was no way to get the information that I was still living. As much as everyone I connected now through different websites and whatnot, the new norm seems to rely on updates from the person in question. Since I was not around to say anything, speculation ran wild.

I digress: Back to Hamilton General.
I had about five different physiotherapists that I worked with on a daily bases and four occupational therapists. I had two nurses a day that would assist in my care, and about four doctors that would cycle through the floor over the four months I was there.

The Greatest Question Of All…

What Did You Have?

Probably a good place to start, seeing as everyone is curious. The easy way to answer that is Viral Meningoencephalitis. The most fun way of answering that is that no one knows. I have (successfully?) stumped every medical personnel ever since this all started. Like I said: I was expected to die. Or at least have major mental hinderances. I evaded (wording…) having a large number of the complications that I was told I would have. I do not suffer any pain or great discomfort. The major issues I face are just adapting to a situation which may just be temporary. No one has been able to tell me otherwise.

What wound up happening to me is my brain swelled forcing my brain stem to swell into my spine. My brain flooded my skull with fluid that my body could not combat. A drain was put into my skull to relieve the pressure. My symptoms are irregular and extreme, in a way. I would like to think my long term burdens have been much less extreme. What is incredibly unfortunate is that all the major functions that your body does are governed by this relatively small piece of anatomy. Processes include walking, breathing, heart beat, speech and sight.

Apparently, my medical charts and what not has a giant question mark under diagnosis. I, personally, find this hilarious. I have been managed by some of the best minds on the planet. I have had hundreds of people tracking my first few months very closely. All of this, and I still managed to slip through the cracks of this over burdened system. I have not had a followup yet with any doctor I have ever had. I have only been asked for a consultation three or four times. When it was clear that, at that time, I was in no state to visit, it was dropped. I do not blame the people that I dealt with, I just believe that the system is over tasked with very few people around to pick up the slack. I have spoken to many nurses who felt like they were being run ragged, but were not being paid enough to deal with the situation.

What did I have?

Again, it is a question that plagues me at every turn I make. Meningoencephalitis is the swelling of the brain due to meningitis. The viral describes how antibiotics cannot help me in any way, and antiviral medication has only a sliver of a chance to work. I got that diagnosis from Western Hospital in Toronto, but it is a bandage: A name to put on my chart. Though a large number of symptoms could be related to me in some ways, that was not a clear depiction of what ailed me, and definitely would not have destroyed me in this way. However, it has become my rallying call. My research has exposed a disease that is fairly unknown in this country. I am trying to educate where I can, but I only know how I responded to everything; I am unaware how the disease responds to everything. My only hope is that, with time, everything will become clearer and a version of easier. For both me, and everyone involved.