After lunch on November 23th I was wheeled down the hall to the next tower. I had escaped the mean nurses and now entered the rehabilitation program floor. I remember the weather was overcast or raining it was dark. This isolation room would be my final prison for the next 3 months. I had remembered being told the ESBL treatments were for a week. I was told within a few days that the isolation was to be permanent due to hospital policies.
The first nurse I seen went through the riot act that made me fear that the poor treatment from the last floor was going to continue. I spent the rest of my night in the room just listening to what I could hear from the hall.
The next day involved being assessed for what I was capable of. It was also more just waiting around doing nothing.
Over the next few weeks, I tried really hard and progressed to sitting up, and sliding on a transfer board to a wheelchair with help. It was lots of long nights and days. Typically only a little over an hour of physiotherapy and occupational therapy. I was always excited when the respiratory therapist came four times a day to use this big hand pump thing to keep my lungs expanded.
Sitting in a wheelchair for hours was really hard. My bum would get sore from the pressure on it and it felt weird due to the lack of full feeling. There was one day in December, I made it up to 9 hours in the chair. That day they held a Christmas party and had some good singers.
I was upgraded to a better wheelchair and I started trying to push myself, which at first I could only do a few footsteps length, but I think it was key to getting my arms stronger. I was eventually able to wheel pretty fast. Since I was in isolation, I was only able to get out with someone gowned up. Considering how busy everyone was, it didn't happen that much. Partially because of my anxiety I couldn't bring myself to ask for help.
Just before Christmas, they started me with standing. It hurt a lot using the stand lift especially when slowly standing. I soon learned that if I stood up myself when almost there it hurt less. After standing a couple of days, I was put in a suspended support and walked a few metres the first day.
The next time, I considered taking rests but when up I just kept going and walked a good distance, until after Christmas I was able to walk without a standing support and moved on to a two-wheel walker. It was at this time that I came up with the goal of going to my work Christmas party in mid-January, although I had not told anyone yet.
On my left hand my Ulnar nerve had never really came back. In The end of March, I had a referral to the plastic surgeon to see if he could do anything. It was pretty fast after the referral that I got the appointment to see him earlier in the following week.
I accepted and met with him. I really wasn’t sure what to expect. He had me attempt a couple of movements and explained the surgery that he wanted to try. After the meeting I had to fill out a long form and then just wait. I was a bit nervous waiting for the operation, and never heard anything back for a few months. On the last week of June, I was at work and my phone rang and it was his office and they offered July 12th as the date, and I eagerly agreed. She explained the hospital would call and make the arrangements.
The next day I had the call from the hospital and did the registration and was given the time and made an appointment for a phone pre-op screening call. On June 30th I had the call before I took off on the Canada Day quest. I was told to wash the night before and the morning of, not to eat after midnight, and to take my pills before 8am, and bring my medications with me.
Leading up to the day I was getting more and more nervous. Besides the normal surgery complications, I was more scared by the 5% statistic that the anaesthetic was going to trigger the GBS again.
When it came the day for the surgery, I got up early and showered, and got dressed. I had plenty of time so I drove to the bank and took out some money to pay for parking. I returned home and met my mother before driving myself to the hospital. Since I was early, I went to visit some nurses on my way to day surgery.
When I went to day surgery, I was immediately brought back and was changed and weighed. They put these socks on that pumped up and down to squeeze my leg every few minutes. Shortly after I was taken down the hall to the surgery hall and met with the Anesthesiologist who asked some questions and spent a while reading my files. I was then brought into the surgical suite and had to slide over to the table. They then took a few minutes to position me and place my arm on a side table.
The Anesthesiologist poked me in the other arm a few times and really hurt me a lot. After he got me to breath in some air, and I blacked out with no dreams at all.
It woke up and my left arm felt like a cat scratched my wrist and elbow. It was covered with a bandage. There was a nurse sitting beside me, that kept checking my vitals. After I woke up she took out the IV tubes and gave me a popsicle to eat. I asked what time it was and it was almost two and a half hours later. I was kind of shocked on the amount of time.
I was moved back to the day surgery suite and got redressed and given Tylenol and Advil then instructed not to touch the bandage until I see the doctor 14 days later on the 25th. I also had my arm placed in a sling for the time. I then got home and watched TV and fell asleep until supper time.
Living with a sling really sucks. My fingers almost feel as before, there my be a touch more feeling on my pinky finger. The hardest part is pulling up pants with one had. It would be so much easier is it was socially acceptable to wear a dress.
I was off the Friday before Canada Day and had Physio and a call for the pre-op to fix my pinky finger. I came up with a plan to take a spontaneous road trip to Ottawa. My surgery is concerning for the possible side effects. I was pretty devastated after the call with my anxiety.
Since I was less than 500km from my oil change mileage I went to Kia and booked the appoint for this past week.
I went home and cleared out everything from my car I didn’t need, grabbed my passport and wad of US cash and took off down the Hwy 1 towards the border. At the border I got through pretty quickly and had no issues. Having all the signs in a weird foreign system of measurement increased my anxiety. In Calais, I fueled up and headed down Route 9 to Bangor.
I stopped for dinner at Dysart’s. It was a pretty good meatloaf. I then proceeded down Route 2 to Skowhagen where I needed to pee bad so I stopped at a gas station and it was there my fate turned. My GPS lost my route and I was lost. I kind of remember Route 201 so I turned on it and kept questioning that I was not on the right road,
It turned out I wasn’t, I really wanted 201A in the next town. Around midnight I ended up at the border on the highway headed towards Quebec City. By this point it started to rain really hard. I was not able to even drive the speed limit it was that hard. I made it to an Esso in Ascot Corner in Quebec and refuelled again at 1am. I then kept driving but got too tired and stopped at a mall and slept for an hour.
My sleep was interrupted by the lights of a cop that woke me to see if I was alright. He started talking in French and I was trying to translate it and I didn’t recognize enough words. He then spoke English and I responded I was okay and he moved on.
I then determined I needed to move on. I then crossed the bridge to Montreal as the break of day was happening. I was having such bad anxiety Siri was giving instructions that made no sense and there were so many construction signs that made no sense either. I stopped on a side street for a while and decided I wasn’t making it to Ottawa and it was time for starting a return back to see fireworks.
After a few hours back on the Highway, I needed so sleep so I pulled into a gas station and slept for an hour in the back corner of a Petro Canada parking lot in my car. I continued on the journey down the highway. As I was passing the town of Levis I seen the sign to cross the bridge to Quebec City. Since I had never been there before, I made the decision I needed to see it.
I took a drive through the packed old town and it was very reminiscent of the old parts of Paris. (Montreal is more reminiscent of the rest of Paris.) After leaving Quebec, the next stop was a gas and Tim’s break in Rivière de Loup. (a place Siri can’t pronounce close to right.) When ordering I asked if she spoke English and it was a fast nope. So I tried to order a coffee and a Dutchie and I was certain that I can pronounce Hollandaise properly but she had no clue.
Armed with my coffee and gas it was off to New Brunswick and lots more highway with spots of rain along the way. The next stop was Florencevile and I grabbed a donair sub that was really good. The interesting part was a guy in line ahead of me was Amish and had his horses and carriage waiting outside.
As I passed through Fredericton, the rain had stopped and was starting to clear. The people from home were messaging on Facebook that the weather in Saint John was bad and there was no fireworks to hurry back for. So I headed home anyways.
The next day I slept in until noon and then wasted most of the day away. I had seen that Hampton was having fireworks and decided to go see them, but then heard that Cambridge-Narrows was having some so I went there instead. They were pretty impressive and amazing.
It’s now November 12th and I just got moved out of the ICU! It was a bit exciting for the change of scenery. However, it took forever to get service. I needed desperately people to talk to. I was having pain from not moving so bad in what I still couldn’t move. It was very sore where so was laying on the bed.
I was also still having trauma issues mentally from trying to convince myself that this we real and not a false rabbit hole I went down in some of my hallucinations.
The first night was interesting, there was an old guy in the bed next to me and he kept trying to hang himself in the rails until then moved him late at night. They eventually moved him to another room.
The next day, I was once again ringing and people would not come for a half hour to an hour. I felt so helpless and sad that I survived. This was the first day I had the really mean (or over-worked) nurse that told my sister it was unrealistic that they would come help me within a reasonable time. There was a new person placed into the room next to me. He had visitors that brought him a McDonald’s Chicken Nugget Happy Meal. The even fought over the toy.
The guy had TV service and I didn’t because I am cheep and didn’t want to spend the ridiculous money they cost. (Almost 5 times the price of home cable for less channels.) That night he fell asleep watching Ghostbusters on AMC. It repeated all night so I could not tell what time it was and I had started to get terrors again.
In the morning after breakfast, I was taken for a bath! My first one in months. It was so nice to soak in there and not have the pressure points of laying in that bed. However after the bath, everything changed. The previous day the catheter was starting to burn and hurt and they changed it. They also ran a test and it tested positive for ESBL, so I had to be moved into isolation. Which meant that the nurses and everyone would need to gown up to see me.
The almost now non-existent nurses became even rarer. I had it arranged that my mother visited me for supper and my step father visited me most lunches that week to help me eat since my hands were very weak. Although during the meals that no one was there I tried hard to do some of it myself since it would take so long and I was hungry.
That week I also started doing more and worked with Physio and OT for trying some stretching and sitting on the bed. I was also moved by a Hoyer to sit in a wheel chair for about 2 hours a day for lunch. It hurt so much from the pressure on my butt. The next week they tried using the steady lift to try transferring me to the commode but that didn’t work very well, and the commode really hurt.
Near the end of the week, I made the decision to have the catheter removed. I was nervous about not being ready but I tried anyways. I needed help with the urinal so that relied on the almost non-existent nurses. My urges would not give much time either so, I ended up wetting myself a lot.
Given that anxiety had always been an issue for me, dealing with asking for help was very hard, it was even harder dealing with having to be cleaned. I was so glad that the following, Wednesday much sooner than expected I was moved off that floor to the rehab unit.
I’m going to move the story along and will in the future write more hallucination stories.
Once it was determined that I was going to go home, the nurse told me and I wanted to bad to leave Brampton. Mostly because I believed that the whole town wanted to kill me in the riots. I was still having lots of difficulty staying awake.
I thought that so was moved onto a ship and was going to sail back to Saint John. I was stuck in a small little all white room. We then stopped, a giant rock had collapsed the passage and this Newfie came down from the bridge and said “She’s between not good and not so good.” I knocked over something and the ship caught on fire and sank. I was so scared I wasn’t going to make it back.
Then I woke up (October 23, 2016) again and remember the nurses and air paramedic trying to switch over my breathing machine but it was the wrong size. They eventually did something but I got bored and blacked out again. I then woke up and I was outside and it was cool, they then put me on the plane and I felt strapped against a wall. I had tons of stuff and equipment beside me. Then the plane took off, and I blacked out.
I remember that we landed. During the flight I had this metal rack thing with me and I was not supposed to play with it and I couldn’t help myself and was stuck in it again by the time we landed. I was taken out of the plane and they decided to get me out of it by dropping me upside-down on to another hospital bed. It really scared me. Then I black out.
I wake and we are in the hallway of the hospital on the 4th floor headed into the ICU and then moved into the pod. I then black out again.
After several days they preformed another round of IVIG treatment and then the night of November 4th, I had this weird dream. I was in an amusement park house on the West Side. I was pulled out of the collapsing building and then was put back in my hospital bed. Then I started winning against the ropes that we keeping me in place. The little animal thing that was robotic was biting me and I was trying to get my clamps off my had but they keep ending up back on. The animal thing is attached it’s leash to my right arm and decided it wanted to take off and jumps off the bed punning me down. Then this drunk naked guy falls down on me and passes out on my left leg and right shoulder. I wake up and I can move my right leg, left elbow, and right wrist. Over the next week I transitioned into breathing myself.
Around November 8th the breathing machine was removed and I started to eat liquids then real food. I finally got the water I craved. Honestly, I tried to do this in terror of blacking out again. Then November 11th, I was moved after lunch to the Neuro floor and I was so excited!
This is another one of my memories while under good drugs in hospital, most of it never happened but it is how I remember it happening.
I was brought for the morning after cleanup to this glass office building that was being used to house patients. As the day went on the nurse was having trouble moving me for cleaning and the brought in a lift thing to try that didn’t work out. However, as I was on the lift and couldn’t move it had me down near the floor and beside the desk. Then this snake came out from the desk and this guy used a spinning rope on a stick thing to kill it but there were dozens more everywhere.
The decided that I needed to get back to the main hospital so I was moved through the Indian spice store next door and they used a hose to dry and get the snake infestation out but it got too much and I got pulled under into the drain with some other dead bodies that were grossing me out. I managed to be pulled out and placed on another stretcher. This left us in a parking lot out side the mall. In the parking lot they were shooting a running scene and as I was laying on the bed they were running as this Indian boy sewed and reupholstered a hospital bed. Then we just kept running and running like a stop action scene that went on for ever and ever.
While this happens my mother and step-father showed up and were discussing with the program director as special surgery to fix something. The hospital was down with it, as a special exception.
Eventually it came to a point I couldn’t take it anymore but couldn’t stop to get out. Unless I gave in nothing was happening, if I opened my eyes it would resume. If I closed them it would reset. Then I started to float up in the air, and drop into the cold wet muddy ditch and be flowed down the river. My thoughts were to do nothing and wait for a nurse to come and get me like they did about twice a day.
Then the nurse came and she couldn’t get me. I just floated there. Then I started to float around this castle like amusement park. Except all the people were socializing beer bottle men, with different New Brunswick town labels, and the women were cocktails with long legs. There seemed to be no escaping. I even tried breaking beer bottles on them to get them to throw me out and it didn’t work.
I kept hearing the hospital announcements and then found out that this castle was part of the Brampton hospital and the “Code” announcements could be heard there. I kept trying to escape and every now and then a nurse came and tried to get me to go back but not succeeding. I was getting cold and wet and tired and just wanted to leave.
Eventually one does, and I start to follow her to get out. I thought my tracheotomy device had broken and parts went into my stomach. As we were almost out. I thought going on a ride thing to see the exhibit was a good idea because I was getting tired of walking. It was an exhibit of histories of washrooms and racists. (Probably related to CNN news coverage on the TV)
After through the exhibit I couldn’t stand up. The GBS like things were happening in the legs. The seat on a string just kept moving and was headed to a woman’s section and no one would let my chair go there, and then they wanted me to buy a ticket and I had no way to and the chair kept doing repetitions.
The people rearranged the track and directed the seat to security for my bad behaviour as I pissed them off. As I was moving along the track I was getting worried that I was I was going to die as I was spitting up batteries from the implanted breathing machine. (I never had one of those in reality) Then this nurse guy comes to take care of me to try and get me off this chair.
The end of the line is this bed rest area machine, that I have to win a game to proceed and I had not time for this and was getting frustrated and starting to black out. It then released me into another room and it was filled with people playing bingo and eating a fried chicken buffet. I was trying still to get out of the chair.
The Bingo amusement started to rise up and the people eating in that section were crushed to death and there was blood everywhere, they then tried cutting the ropes and it went back down, and then it went up again and everyone in the room was sliced to death with stings. I was then being dragged across the town as the Black Lives Matters and hippy protesters were trying to mob me. I had no way of doing anything. The guy nurse was trying to prep me for the surgery and was hired by my mother.
After slaughtering the majority of the town I almost die and get trapped against a fence by this old house. The whole remaining town wants me dead and starts a lynch mob. I sneak into the house and it turns out to be a very old protester fraternity with all these escape tunnels. The place is like a church so a I decide to prey there, and rob their sacred symbols.
I then end up turning myself into a police officer, who then grabs me and we start running down the trail. The sound of my breathing machine I swallowed is making a repeating noice that sounds like their chant, so it starts the protestors in sync which makes my police officer more able to duck and shoot them in self defence. When clear we keep running and running through the streets and run through a dinner where the cop gets a sandwich and I throw garbage on the floor that just further gets the town people more upset at me.
There is a cop car next to us progestin the run and propaganda on the buildings. I lose the cop when a car is set on fire, I climb onto a rail and try to jump and kill myself, I felt so bad even though I had no control of the situation. Unfortunately there was a young girl’s graduation recital and they were upset they didn’t want the girls to see what I was going to do.
I then heard my mother and step-father in the car upset that it had come to this my mother was in tears. I then started to run along the power lines following them as they were on the phone with a relative local to the area. I really wanted nothing else but to see them one last time and tell her I loved her. That and grape pop, I really wanted grape pop.
As I kept running, another guy my age started running with me and filming it, he also gave me a wi-fi phone since I lost my phone at the hospital. Mostly so we could communicate. Every time I stopped running the mob would find me. I just couldn’t stop to talk to my mother.
I then came across this grocery store that was having a party and was using my pictures and logo without my permission, and they had grape pop. So I trashed the place and pooped and slid on a slopped wall of ice cream. The called the police and the police came to get me and I started running again.
Until I found the convenience store that was identical to the first. So I trashed it again. This went on for a few times. I then learned that the guy that gave me the phone was working for the store and was robot from the waist down. Him and his friends were machines that worked to run the store efficiently and that all the items were perfectly and efficiently merchandised for profit. There was an alarm that sounded every time an inefficiency occurred. I rested there I was so tired but the owner wanted me gone, but for some reason I stayed.
He sleeps next to me and I was so confused, and started questioning if this was really real and wanted out but couldn’t. I tried kissing him to piss him off but he shook his head that that wasn’t the solution.
The next morning I went to try to buy a Bell SIM card and a real phone but had no money. I then convinced the system to give me what a I want and use a glitch to get unlimited credit. Then the mall we were in was attacked and so headed to the Sears that was made of paper and had paper people that set up the store for the holidays and was more elite then a real store. The then robbed the nurse that happened to be with me and wanted my to turn myself in. I refused and they started a demonstration inside. Out the window all you could see was smoke clouds from the city on fire.
I managed to hide by there was a TV crew taping a show. Then I blacked out. When I woke up we were at the lake house and they were taping an antiques roadshow. I couldn’t help myself and was bored so I started breaking things then trying not to break things. After the event we went outside as others had wine and I tried to go swimming but there was ice on the water and couldn’t. Then the protesters started beating on the door for a long time then faster and faster for a long time. (This was a vibrator in the bed)
I was avoiding them so I hid in the woods and got lost, I found an amusement park. I tried to get A&W or McDonalds but couldn’t since I had no money, and barely any clothes. The 4 doctors that hung out together was at the McDonald’s and were plotting making this sex documentary for CBC that followed these sex workers in New York that would be beaten for telling their story. Having never experienced that and wanting to make TV, I agreed.
We then went to NYC and I waited in the hot car forever. Trying hard to not black out until my scene. It ends up getting cut and not happening. I then end up driving back with the crew and there are protests and fires along the highway, so we never get to stop for lunch and I am really thirsty and want water badly. I then wake back in Brampton at the store until the nurse comes to move me.
The following events are what I remember happening but I was on good drugs and were what my mind remembers happening only. I cannot tell what never actually happened.
After blacking in an out, there were periods where I was conscious an periods that I wasn’t. After the first night, I was put to sleep and rested well or as well as I could with the breathing machine. Initially I felt that I was kind of in control but the machine was not in time with what I was trying to breath. I learned that if I just gave in and stopped trying to breath I was getting more air.
I also remember being asked constantly if I was in pain. Moving my eyes was all I had to communicate. After trying so many times to get them to stop asking they just kept on and I was getting fed up and just gave in and always said yes. This is when an Indian doctor that looked like Kumar with big white teeth smile,came and he told me “Trust me I get you good stuff.”
Then I totally lost track of time and days and nights blurred together. The second night, I was moved to the dark basement and the nurse was in the other room. The repetition of the breathing machine was hypnotic and I began floating towards the door at the end of the hall when my eyes were closed and returned to the bed when my eyes were open. The bed kept moving under me as well.
Later on in the night I floated around and waited on the sun rising and was left out in the parking lot. The nurse that kept hurting me decided to clean me and I was stuffed in the back of the car. Then hosed down at the car wash. Then left around outside in a outdoor hardware store and they were trying to find me as I was sliding down the path looking for water. I was so hot and needed water.
I was eventually found and brought back to my hospital room.
One night I remember a nurse come in and it was early night. She had an American accent and I remember he saying “You like baseball buddy?” I don’t but she put it on anyways. It was the first time I see the TV working. The TV was left on constantly for the most part of the night, and I lost track of the game and blacked out, when I returned to reality, the SportsNet morning show was left on and it repeats over and over in a torturous fashion. The nurse kept telling my that my mother and sister called and that they were thinking of me. Which I knew as I heard them complaining on how demanding, and annoying they were trying to get information that they don’t have to give. They also talked strategies on how to avoid my mother.
There was a day that they started stretching me, and running some tests. I remember not doing well. Then as I was waiting for them to move my bed to it’s spot, one wheel fell over the edge of the construction area and the stretched was stuck sideways and I couldn’t hold on and was going to fall off. The nurse came to help and decided to change me instead of helping. I didn’t understand why he would do that, but then I came to reality and realized there was no staircase there.
There was this program manager doctor and her husband that was running the hospital and then things started going down hill from there. Although he never talked. He used this long tube things to control objects. They had a lake house and the lake was frozen that kept me from getting to water.
As I was in the ambulance rushing to the hospital. I noticed that it was a Peel Region paramedic so I realized I wasn’t going to Toronto and probably Mississauga and the ride seemed really long. The biggest thought on my mind at that moment was not my condition, but that I couldn’t get ahold of my friends that were meeting me, that my bag was still at the airport, and that I haven’t cleared customs.
I started to notice that the turns and distance of freeways didn’t seem right for Mississauga. I asked the paramedic and he said we were headed to Brampton Civic Hospital.Once we arrived, I was rolled into the hospital an the person at the hospital pointed to one of a long hallway of hospital beds and the Paramedic had me roll over to the other bed. Then I was left in the hallway for a long time. A woman eventually arrives and I give her my insurance card and Medicare card and she admits me to the hospital. I’m not moving much at this point.
After another long wait this nurse comes with a phone. The Peel Police are on the line and ask if it is okay to tell my sister where I am at. I agreed and she then left. I was so tired and couldn’t sleep because of I would stop breathing.
The nurse comes back and I have to pee so she gets me a urinal that I can’t use. I think it is because I am laying down, the reality is I lost control of the mussels. The doctor thinks he knows what it is and has to take a spinal tap to check. I get brought into the little room for the test. I also decide at that time that it is a good idea to try to stand and pee. The nurse stops me and tests come back that it is Guillain–Barré syndrome (GBS).
This head doctor in the ICU comes to talk to me, but I was occupied and didn’t remember most of what she said but I remember her say that I was going to be admired, that it was going to take 4 weeks to be resolved, because I am under 40 that the survival rate is pretty good. She also wanted my medical history because I was going to have to have a trach put in within a half hour.
I was moved to the ICU and they put a catheter in me. The room was light coloured, there was a window to my left, there was an LCD TV straight ahead, and a red LED clock above it. To the right of the TV there is a board that had notices on it like the date, doctor, treatment, and the room phone number.
At this point I don’t remember much that really happened. The next few post will be what I remember, but a lot of it never happened my brain made it real to me.