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The Path to Freedom

After the Christmas party, I was pumped and the goal wasn’t to just walk but to get out. The next weekend I went to a movie with a friend. The main goal that I needed to go home was to go up my front steps and to transfer onto a shower bench. After lots of practice, I was managing a few steps of various height with the hospital physiotherapist.

The next step was going home for a home visit to see what was needed for me to go home. When I arrived at the house that I hadn’t seen for months, it felt familiar but didn’t seem like home. I couldn’t even see half of it. Waking up the steps into my house was the hard part. My rails were too low to give support.

When I got into the house, I tried sitting on my couch and it was still too low to get up from without help. I also needed a walker still to get around. The walker also didn’t fit well through doors. That night my sister brought me to the Dolan Rd Irving and then went back to the hospital.

The next weekend was my trial overnight. I was really looking forward to it but once home reality kicked in. There was little I could do without help, and I didn’t really have much help. The worst part was at night, my bed was so uncomfortable and I couldn’t get up to go to the bathroom to even pee in the dark. Putting on the ankle brace was hard. The next day I returned to the hospital distressed that the weekend didn’t go that well.

At that point, my hospital release was extended about a month, and I had an idea of what I needed to work on. Unfortunately, being in isolation was impeding the process. It was that week that I ran into infection control checking to see if the sign was on my door while I was having my lunch. They were two very nice ladies. I made it clear to them that the isolation was impending my care and was stupid since I was researching the procedures of other hospitals in dealing with ESBL and that I was probably cured two months earlier.

Later that day, they came back and the Director decided to retest and then maybe decide what could be done. Having no choice I agreed and urinated in a cup and had a swab taken from my but. After two more tests a week apart, the results came back and I was cleared! Since I could solo walk with a walker by this point I did a victory lap.

Up to this point, I had two Physio and one OT session every weekday. The staffing became a bit short and my exercises Physio session was going to be cut. I asked if I could come to the gym and do them solo. (I was motivated at this point.) They agreed so I started doing them myself and then gradually tried doing the harder version that was on the sheet and was excited each time things got better.

Finally, after 5 months and 3 days at the hospital, I was released on March 1st.

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The Life of the Party Must Be At The Party

On the spur of the moment I came up with a wild goal of getting to my work Christmas party on January 21st. I then told my Physio and OT that this was going to be my goal right after the Christmas holiday.

Step 1: The Car Transfer

Up to this point , I was barely able to slide on a varnished board but I gave it my everything to be able to do that. However, in doing that my muscles started to build more rapidly and I was moving on to being able to stand using a two-wheel walker, and walking a little with it with a physiotherapist. We had arranged an afternoon with my step-father that had a higher vehicle to get into to try with Physio to get the okay to go. The day I picked turned out to be a quite warm day for January and in one try I was able to get in and place myself in the sea. I couldn’t get my own seat belt on myself but it looked promising.

Step 2: Arrange tickets

My coworkers were visiting me in the hospital regularly and I got them to arrange to get me a ticket and my parents a ticket as well, and it was to be kept a very tight secret which is almost impossible to do with the closeness of the people I work with.

Step 3: Not arrive naked

Up to this point , I had not needed any clothes so I was just wearing Johnnies and pyjama pants most days. I had to arrange for my sister to bring me clothes. She got me everything I needed. I had also been working for weeks trying to be able to move enough to pull it off.

It was really funny the nurse helping me with the buttons as my fingers were still very week. I was nervous of having to use the bathroom while out.

Step 4: Arrange for my parents to bring me

This should have been the easy part but my anxiety made it the hardest part. Fortunately , they were on board and I arranged for them to be able to go as well, which they enthusiastically agreed to do.

Operation a success!

It then became the night of the party. I arranged to get picked up after dinner as it was the best time to have the nurses get me ready to go out with the limited help I still needed. I was just starting with a walker a bit in therapy, but the most part I was wheelchair bound. With the help of my mother , I made my way down to the waiting car. It was pretty cold and the temperature hit me as I had left the hospital for the first time since September (almost 4 months).

At this point , my tentative release date was just a few weeks away and this was a real challenge to see my progress. We drove around for a bit as I had about 2 hours to kill before the party. So many things had looked different but quite the same. I was so happy to at least be home. If I had stayed in Brampton, or even if I was transferred to rehab at the Stan Cassidy Centre in Fredericton I don’t think I would have been as motivated for this as I was and it was a goal that pushed me forward and gives hope that more was possible.

Me at the Party

I waited fashionably late to arrive, almost a half hour after the doors opened. Mainly to have more people there to get a bigger welcoming. Much of what I do is plotted for maximum effect. The ramp was in the back door and the key people in on the secret met me and I transferred out of the car and into the wheelchair and I entered the legion hall.

So many people came up to me to see how I was doing it was incredible! The buffet began and I waited in line. My mother helped me, and everyone tried to help me. I really wanted to try and see what I could do but no one was letting that happen.

Eventually, I did manage to ditch everyone and made a solo run to the buffet. I had lots of trouble with the nachos and squeezing thongs.

I danced as much as I could in my chair and had a great time. I eventually needed to use the washroom and managed on my own. I wheeled up to the urinal and stood up on my own grabbing the pipe for support, and it took everything I had to do it. I really wasn’t ready but my brain was determined that there must be a way. As I left the washroom I found the handicapped washroom that would have been safer and easier. It was too late for that. I danced a lot more, said some goodbyes and left.

I wanted to let go and fly down the ramp but nobody was going to let that happen. I got frustrated that no one was letting me try things myself. When I got back to the hospital, I wanted to wheel myself back to the room but my mother wouldn’t let me do that and we got into an argument again. I was just so frustrated that so was not being considerate as I should have been. I wanted nothing more than to be independent.

I made it back and the nurse helped me back to bed and after some meds, I fell soundly asleep.

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The Breathing Machine Experience

Back when I was in ICU, you cannot imagine what it is like to not really know what is real and what is in your head.

When I first had the machines breathing for me, I felt like I was in control of them and that they were supporting me when my brain wanted air until I would lose focus on breathing and then it would kick in. Every function of one’s body has it’s own unique rhythm from heartbeat to a breath of air.

At first when it kicked in the timing was wrong and it was pissing me off royally! Not as much however as the medical professionals asking is I was in pain and not being able to effectively communicate so they gave me good stuff and I would come in and out of consciousness but no one seemed to know and I blacked out again.

After a while, I just gave in and let the machine breath for me. I stopped fighting it and it became less noticeable except I knew I couldn’t breathe as well as before and my air wasn’t right and I tried to just go back to sleep and get the four weeks I thought I was promised over with.

When I became time for me to get out of everything. I would wake up and there would be no one there. I couldn’t talk, but learned that if I tried to fight the machine and breath erratically that it would set off alarms and people would come. Most of the time they seemed pissed off and tried to get me to relax but I desperately needed someone there to try and keep me from drifting back into the fake world of my head. However, no one would stay and for many days I would drift back.

I really am not sure what it was but there came a point where they changed my air and I had to struggle to breathe on my own. It was however that that made me decide I was going to breath myself again, then within days from that about 3-4, it was removed.