Dear Jacquie
Christmas at Diana's was great. Using the walker proved successful to get around. It was curious to me why I could not walk and yet if I hung onto a walker I could. Even though my hands were numb, pushing my upper body weight through my arms onto my hands which were placed on the walker worked.
Diana's huge house was laden with lights and Christmas decorations. I felt a spark in my heart and it felt like Christmas, seeing the lights and enjoying a big turkey dinner with my family. I only spent two hours there because Trisha suddenly said it was time to go. I protested somewhat telling Trisha I was not ready to leave but her decision remained firm.
"Wait," Diana said, "I have a gift for Autumn."
My gift from Diana was brilliant. She gave me a cell phone so I could contact people from my hospital bed. The cell phone was one that required purchased minutes and one hundred minutes came with the phone. After I opened my gift, Trisha let her family know it was time to go and we gathered to say out goodbyes to everyone still partying and we left. Driving back to the city I was aware of how much Trisha and Blair went out of their way and sacrificed their Christmas for me. Taking me to Diana's added two hours to their trip. They live on the edge of the city and the hospital was smack in the middle. They had to travel through the city each way when they didn't have to if they did not pick me up.
I thanked Trisha for taking me to Diana's when she got me back to my room and then she left. I found Joan in her bed. The television was on the channel I had left it, but she she was not watching it. She was sleeping. A nurse raised the head of my bed and helped me transfer from the wheelchair into the bed. Joan woke up and greeted me with a "Hi."
"Where did you go?" she asked.
I went to my sister's for Christmas" I answered. "Did you family come to see you. "
"I don't know" she said, "maybe."
Again I got a glimpse of Joan's memory and cognitive function. " I would use my therapeutic skills in conversing with the cognitively impaired I had training for, to make Joan's experience as my roommate as good as possible" I thought.
"Do you like this channel on the television?" I asked.
"Yes, I like to watch this" she replied and then went back to sleep. I took my night time meds and fell asleep with the television on.
***
Quickly the day of the family meeting arrived. A social worker that had been assigned to my case prepared me for the meeting, explaining it was to decide what to do with my house. Diana came up to my room and took me by wheelchair to a room in the Social Work Department. I felt like a criminal on my way to attend my sentencing. I knew what my criminal acts were. I was not a thief, murderer, embezzler, or an abuser, but a hoarder, a crime that would follow me the rest of my life. I am a hoarder, I committed a hoard and now I am about to be faced with the consequences.
From a hoarder's perspective hoarding is not a problem until some one else witnesses the hoard. I always had hope by thinking that I will deal with things tomorrow. Then, when someone else witnesses the devastation, the secret is out, it comes to light and the guilt. shame and self deformation begins as well as the pressure to deal with it. My hoard was witnessed first by my sister when she picked me up to go to the hospital. At that point I became a hoarder.
There were other witnesses to testify to what I had done. Witnesses that saw the condition of my house. and it turned out that there were more than I liked. I found out later that my dad and my brother Jim had also gone into my house. I was very embarrassed and mortified that anyone would see my hoard. I liken it to those dreams I've had where I was naked in public. I hated myself for destroying my house.
As I entered the meeting room I was shocked to see the witnesses that had come for my sentencing. Trisha, Blair, Diana and her husband Karl. The attendance of my sisters was not surprising but I had not anticipated that their husbands would be there. To this day I'm not sure if my brother's-in-law were there for my sake or just for the sake of their wives, my sisters. It was understandable that they would be there to oversee their wives interests as it was my sisters who were left with the clean up of my crime.
The social worker chaired the meeting and started the meeting with the general meeting etiquette.
"We are all here out of concern for Autumn and to determine what needs to done for a positive future for her" was her introduction. Then addressing me she said "We don't really know what level of function you will regain, or what level of independence will be restored which will determine whether you will need assisted facility living. "Regardless" she went on "we need to start by addressing your house. What are your thoughts about your house?"
"I would like to clean it and continue to live there." I replied.
The social worker then asked, which I'm sure my family was thinking, "How are you going to do that?"
I thought for a minute and could not come up with any solution to cleaning my house and before I could speak Diana reported that she check cleaning services and got estimates on how much it would cost to clean the house out. "It will cost minimally ten thousand dollars to clean your house and that does not include dealing with the mold and mice."
"I'd like to wait until I know how much better I get and If I'm able I'll do it myself." I said.
"Diana quickly pointed out, "It will take a while to determine how well you get and you don't know if you will. Meanwhile you can't pay the mortgage."
"I can tap into the mortgage insurance with my disability." I said reaching for anything that would give me time to clean it out myself.
"You lived there ten years and in that time you let it get the way it is and never did anything to clean it up" Diana said. "In fact a couple of times we came over and cleaned up your house entirely and you did not maintain in, you let it get back the same way, even worse." she said sternly.
The social worker then addressed my family. "What do your folks see happening."
Blair suggested that my house could be sold for the property value, house unseen. "I know a real estate agent that would do that for us."
Trisha implored with me, "Just think how it would feel to get a fresh start and leave all that mess, that burden behind. You could live a new life; the life you used to have when you had friends and family over, do your crafts; all the things you are good at and used to do."
I thought about how good it would feel to start over with a clean slate but my need to undo what I had done was strong. I felt I needed to clean up my mess. "No," I said" I want to do anything necessary to clean up my house."
Just then Blair stood up and bolted for the door while saying, "I'm wasting my time here."
"Oh my gosh" I thought. Blair is always so easy going and I had never seen him so stern.
I didn't want to disappoint Blair so before he reached the door I hollered "Wait! How would selling my house work." I was glad to see him return to his chair and sit down.
"I can call the real estate agent, find out the details and get back to you." Blair said "I think this is your only course of action, and the best for you. So do you you want me to call the agent?" he asked.
And so there it was. The moment that I had to decide what to do about the results of my ten years of hoarding. It wasn't a sentence after all, it was my decision.
"Yes", I answered Blair, "see what your real estate agent can do" I felt like I had no other choice but to go with what my family wanted. I knew if I did not say yes to selling my house that my family would not continue to help me. Why would they if I chose not to do what seemed to be the only recourse. The social worker then ended the meeting by summarizing that Blair would call his agent and report back to me.
Blair gave me a big hug and said "you have made the right decision and now you can start fresh".
Trisha also gave me a big hug and said "I am excited for you for your future".
Following the meeting Diana then took me to the hospital cafeteria for coffee. We talked about how good my decision to sell my house was. I did feel a sense of relief. Thinking about dealing with that house was an overwhelming burden on me and now I don't have to face it. When I left my house to go to the hospital I didn't realize I would not have to come back and face what I had done. I destroyed my house and got to just walk away from it.
Walking away from my house however did not disperse my guilt. Guilt that does not lead to knowledge only leads to the continuation of things the way they are; a protection for changelessness. (Audre Lorde, Sister Outsider: Essays and Speeches) I said yes to selling my house but only because I was cornered, pressed by my family and not because I had gained any understanding as to why I hoard. Therefore at that point I was no further ahead in my psychological healing. It was like I had shot some one with a gun and the courts said I could walk away if I sold the gun to some one else. No need to look at self defence or insanity or any reason why I had shot someone. Just sell the gun and walk away. My family felt like the problem was being dealt with, but my guild remained.
Thursday 28 April 2016
Monday 18 April 2016
Christmas and Cartoons
To Jacquie;
My move by stretcher to the medical unit in the hospital took place two days before Christmas. The hospital was 60 years old and four additions had been constructed on it over the years. As a result, the floors of each addition did not match. The main floor of the additions was the second floor of the original building. It is bad enough laying on a stretcher where your natural view is the ceiling and you get dizzy watching ceiling tiles whizzing by, then to add to the precarious transfer to my new hospital unit, was random turns down hallways and many elevator rides up one floor, then after travelling a maze of hallways, down another elevator. I felt like I was on a very, very slow roller coaster ride.
Finally I arrived to the medical unit where I would end up spending five months. Upon approaching the unit, double doors opened to a long wide hallway. My first impression of the unit was that I had entered a long storage closet with people mingling around the stored items. My room was at the very end of the unit so I was able to observe everything from the beginning to the end of the hallway as I journeyed through it. No wall could be seen because of things parked against them on both sides except for the nursing unit in the middle of the hallway. Empty hospital beds, linen carts, dining tray carts, physical therapy euipment, chairs and housekeeping carts lined both sides of the hallway.
The unit reminded me of a residential street where cars are parked on both sides. When driving down this street if you are faced with an oncoming vehicle, you had to pull over in whatever space you could find to allow the oncoming car to pass. When someone in a wheelchair approached my stretcher, they had to duck into a patient room doorway to allow me to pass.
Whenever I feel I have no direct route to escape or get out of somewhere I feel cluster phobic. Even though I hoarded myself into a small living space at home, here I felt cluserphobic in this cluttered hallway. Florence Nightingale, the mother of modern nursing even identified that "the object and color in the materials around us actually have a physical effect on us, on how we feel. Francine Jay, a minimalist wrote "Your home is living space, not storage space.” This unit looked like a storage space and was dismal. Experiencing it was overwhelming and chaotic to the soul and left me feeling alarmed that I would living here.
There were many hospital uniformed people circling the nursing desk, and in a room behind it. There were chairs parked against the opposite wall from the unit nursing desk. The chairs were occupied by patients that slept with their neck resting on their chest with a soaked hospital gown from drooling, patients that would reach out to you as you passed by squeeling "help me", patients that fiddled with an donned bib or a button on their shirt while mumbling repetitive sounds; as well as patients that were alert and and observing everything going on at the nursing desk. There was an occasional bellow from inside patient rooms as I journeyed down the hallway. If a person was to think of the most indignant environment for those poor souls, this would be it. They were deliberately placed there on display and living the indignity.
I arrived at my room and noticed a young woman occupying the bed closest to the door. Nursing staff were busily around her, following admission procedures as she was just admitted and arrived in the room just slightly before me. I noticed the television attached high on the wall placed in the middle of the two beds in the room. It was connected as it was televising a channel. I waited a while in my bed not knowing what I was expecting to happen next. Finally a nurse that poked her head through the curtain encircling my roommate and said "some one would be with you shorty." I didn't really care about anything other than how I was going to get access to the television.
Finally a nurse came to my bed and told me that they were short staffed. She said "I can start your admission to the unit but someone on the next shift wold have to finish it." I replied "Okay, but can you tell me how I can access the television." She said that there was only one television per room and that my roommate had paid for it for a week so she had the remote control. "Bugger" I thought to myself. Now what am I going to do. My favourite sport State and National championships were gong to be televised and I needed to watch them. I always followed this sport. I had my favorite teams and teams I hated. I wanted to see my favorite teams win, and more so, wanted to see the teams I hated loose."I will figure this out", I thought. I just needed time to meet my roommate and figure out how the the protocols surrounding access to the television worked.
The curtain between my roommate and myself remained pulled separating the two beds in our room so I could not see her. The nurses left and I could hear her visitors and figured out that she had a father and two daughters there. Eventually they left but the curtain remained pulled and she remained silent. I hoped that a nurse would come to finish my admission process because I needed a commode by my bed; either that or assistance to the washroom. My dinner meal tray arrived which I did not attend to. It was difficult to eat without the head of my bed raised and I had no interest in any input when I desperately had to deal with output.
The dining staff came to take the dinner tray. They noticed it was no touched and asked me if I wanted it left to eat later. I was not interested in that so I told them to take it. Then finally a nurse came and finished admitting me to the unit and arranged for a commode to be placed beside my bed. The nurse got my medication dispersement in place. The commode arrived and with major jostling
between my bedside table and my roommate's bedside table it was placed as good as possible for me to transfer onto it. The curtain remained pulled for the remainder of the day so I could not introduce my self to my roommate and get her on board with sharing the television remote. I accepted defeat in the battle of the television for the first day, took my bed time meds and decided to drift off to sleep.
As I was falling asleep my thoughts mingled around in my mind about my illness, where I was, and wondering if I would get better. "Would I be able to walk again?" I wondered. My thoughts then shifted to things I could be thankful for. At least my brain and thoughts were clear, and I still have perfect use of my hands. If I had to, I would use a wheelchair for mobility and get a job in my field at a management level using by intellectual skills and hand function for typing emails and documents.
The next morning I woke to the cartoons on the television. I do not have any children who watched television, so these cartoons were new to me. Cartoon after cartoon was televised and then I realized my roommate had the television programmed to the cartoon channel. The curtain was still drawn between us so I had no access to my roommate or the television remote control. I watched the csartoons and found them very boring. I figured out the plot formula that was used for cartoons; the characters got into some kind of dilemma and a hero always saved the day. Throughout the story there was a lot of repetition; too much for me. Play out one scenario and I get it. No need to repeat the same scenario with different situations before the hero saves the day. The cartoons; Ben 10, Hello Kitty, Clarence, Squirrel Boy, Puff Girls etc. were all aliens to me. The only saviour of the channel was the occasion refreshing episode of Peanuts and Calliou.
As the day progressed, something happened that was far more serious than having to watch cartoons. My left hand started to tingle and before a nurse attended to me so I could report it, my right hand began to tingle. And there it was. Just as quick as a minute, I lost function of both hands. Now, all four limbs were effected by some mysterious disease. I could not walk and now I cannot write or eat. When I tried to pick up a pen or utensil from my overbid table, my hand fell flat on the surface and The scenario of my illness repeated itself, first with my legs then again with my hands. I wondered if there was a hero to save me.
Devistated by the new deterioration of my body, my hands, I refocused my thoughts to my pass to attend Christmas at my sisters which I looked forward to. Diane has Christmas every year for the whole family; my other sister Trisha and her family, and my two brothers James and Carl and their families. Christmas is my favourite time of the year and I put days of effort into it prior to Christmas Day. In fact, getting ready for Christmas Day was the part of the season I most enjoyed. I put a lot of thought into what gifts I will give and spend hours wrapping them. My gift wrapping is so eloquent that people don't want to open them. This Christmas though getting to my sisters for dinner is all I will experience of the magical spirit.
My mind when to what I would be doing if I was not in the hospital. Part of the pre-Christmas preparations I really enjoy is making Christmas decorations. I end up giving them away because they are wasted in the clutter of my house. One year I decorated Trisha, my sister's place. I took over all my decorations including, garland, pine cones, glittered pics, spray paint, faux snow and ribbon. I took over so much that the decorations overtook their home. It got late in the day and although I had decorated much of their house, there was still a lot of decorations yet to be used. I never do anything fast. Everything I do requires much thought and planning. I could tell Trisha's husband Blair was getting agitated and wanted things to wind down so he could go to bed. I moved all the decorations that were not used into the garage to be sorted and bagged, so they could go to bed. I would then quietly leave and lock the doors behind me.
While I was sorting the decorations in their garage, I remember the sick feeling in my stomach and how I felt well out of place. Something I could do to for my sister ended up being a burden on them. If I had taken just enough decorations to do her stair railing and maybe a wreath, that would have been good enough. Instead though, I took all my decorations I had from my house in an attempt to move that part of my hoard where it could be used. While I was decorating Trisha asked me why I didn't put this much effort to decorate at my place but I could not tell her there was no place in my house to work on decorating never mind having a place to display the Christmas my masterpieces. I accumulate to decorate, but don't decorate.
My mind came back to reality as I focused on the Cartoons on the television and then thought about things that needed to be done for me to go out on my pass for Christmas Day. Trisha's family would pick me up and take me to Diane's home which was in a rural area an hours drive from the city. I was given the option of a day pass where I had to be back by eight in the evening or an over night pass. The nursing staff needed to know so they could dispense and give me the medications for the period of time I would be away from the hospital. I knew I would be back Christmas evening but eight o'clock meant that I had to leave Diane's at seven. Considering the early check in time for the day pass, I told them I wanted an overnight pass. That way they would not be expecting me until the next day and I could come back as late as I wanted. Good planning I thought, and things were in place for tomorrow, Christmas Day.
Finally the curtain between me and my roommate was pulled open. I looked over to the very tall, thin and beautiful woman. Our eyes met and I said "Hi, my name is Autumn" She replied that her name was Joan. I got right down to my most pressing matter, the control of the television. I asked her if she minded if we switched the channel from something other than the cartoon channel. She began to look for the remote control on her overbid table and could not find it. "I don't know where it is" she said. I suggested to her that she look for it in her bed. She felt under her pillow and under her covers. Finally she found it between her blanket and sheets. She looked at it and pushed some buttons which did nothing to the television. "You can have it" she said "I don't know how to use it. I could not reach it as there was too much room between out beds so I pushed my overbid table over to her. She placed the remote control on the table and I wheeled it back to me. "I have it" I thought to myself but at that point I realized that my roommate was dependant on others for decisions. I would always make sure the television was on a channel she agreed with I thought. I would help her as much as I could I pledged to myself , and that was the beginning of a survival relationship for both of us in that horrid hospital unit.
The next day was Christmas Day. I woke up with a little spark in my heart. It was short lived as the vampire (the Laboratory technician) arrived to poke me and take some blood. My arms were like a pin cushion. I had been poked daily along with a couple of I.V.s that by now had been removed. I had become used to these pokes. "Merry Christmas" I said to him,, "to bad you have to work today. So my day began with a poke and then I said greeted Joan with "Merry Christmas." " Is it Christmas" she asked. "Yes, " I replied. I told her that I was going out to my sisters and relayed to her that I hoped her daughters came to see her. "Maybe" she said in a way that seemed like she didn't know what to expect that day.
The nursing staff provided a walker for me to use at Dians's and a wheelchair for Trisha to use to get me to the front entrance of the hospital to the vehicle, and from the vehicle into Diane's house. The nurse told me to check at the nursing desk before I left and there she would give me the medications I needed for that day. Things seemed be be in place for my day out until I told the nurse I had diarrhea earlier that morning. Big mistake. She told me I could not go out until I could produce a stool specimen to test for c-diff, a very contagious bacteria. My sister would be there soon to pick me up so I needed to get this done in a hurry. Producing a stool specimen however, proved to be difficult. There was nothing to produce. I was on the commode and grunted and groaned and pushed so hard I almost lost my eyeballs. My sister arrived and had to wait. The nursing staff was pretty firm about me producing a specimen before I could go out. After looking forward to this so much and now it could be twarted by the fact that I could not poop.
After the nurse saw me try as hard as I could to provide them the specimen she told me that they would over look the hospital policy and that I could go. "GREAT." I thought with relief. My nurse transferred me into my wheelchair and I rolled my walker in front of me as Trisha pushed me in the wheelchair. "We have to stop at the desk for my meds" I informed Trisha. So stopped at the desk we did. Trisha was right at the desk and she left me in my wheelchair in the middle of the hall. Trisha reported that she was taking me out. "She has an overnight pass?" the nurse asked Trisha to confirm the details. "No" Trisha said, "She will be back tonight. I tried to get Trisha's attention to explain to her why I had said it would be an overnight pass even though I would be back tonight to allow me to get back later. I could not get Trisha's attention as her tone of speaking to the nurse became louder and more firm. "She will be back tonight" she said. Finally I spoke up loud enough so the nurse could hear me. "Yes," I said, " It will be an overnight pass". Trisha threw up her arms, then looked at me and said, "Whatever, but you will be back tonight".
I felt guilty about the altercation between the nurse and Trisha and then between Trisha and myself. The guilt was not because I was dishonest with the nurse about the length of my pass, but because I know why Trisha was so firm about me coming back to the hospital that night. I was because I had overstayed my welcome many times at her place including the day I decorated her home with Christmas decorations. I had a habit of not wanting to go home because I knew what I would be going home to and I was avoiding that. Trisha did not want me ending up at her place overnight. I felt like a victim because Trisha did not allow me my voice in the matter without questioning my decision. and I felt guilty because I knew why Trisha did what she did. And in the end I thought, "what would it matter if I stayed overnight to extend my Christmas experience and that hurt me. The nurse gave Trisha my meds and off we went.
As Trisha pushed me in my wheelchair to the entrance to the hospital, I explained to her why I asked the nursing staff for an overnight pass. Even though she then understood my decision, she remained firm and curt. I think she was a little agitated because she and her family waited for me to poop and held them up. Once in the vehicle with her husband Blair and her kids, I felt better. Blair was always cheerful and her kids while playing on some sort of electronic games, seemed happy to see me.
It felt good to experience fresh air, even though it was cold. I love cold air as it seems to kiss my cheeks leaving behind redness as if it was lipstick. I was enjoying the country scenery on the way to Diana's; the bright winter sun dancing off the thick quilt of snow on the ground and the occasional Christmas lights when we would pass farms. Then Trisha informed me about a family meeting that was going to happen after the Christmas season. She said that Diana and herself would be there. Not knowing exactly why the meeting was planned, I said "It will be good to firm up some decisions about my future". I knew decisions would be made as that is what meetings are for, communication and making decisions. Trisha replied "Oh, I don't think you will be happy with how it will go" still sounding firm and curt. At that point I didn't want to think about it. This was Christmas Day and I was going to enjoy it.
My move by stretcher to the medical unit in the hospital took place two days before Christmas. The hospital was 60 years old and four additions had been constructed on it over the years. As a result, the floors of each addition did not match. The main floor of the additions was the second floor of the original building. It is bad enough laying on a stretcher where your natural view is the ceiling and you get dizzy watching ceiling tiles whizzing by, then to add to the precarious transfer to my new hospital unit, was random turns down hallways and many elevator rides up one floor, then after travelling a maze of hallways, down another elevator. I felt like I was on a very, very slow roller coaster ride.
Finally I arrived to the medical unit where I would end up spending five months. Upon approaching the unit, double doors opened to a long wide hallway. My first impression of the unit was that I had entered a long storage closet with people mingling around the stored items. My room was at the very end of the unit so I was able to observe everything from the beginning to the end of the hallway as I journeyed through it. No wall could be seen because of things parked against them on both sides except for the nursing unit in the middle of the hallway. Empty hospital beds, linen carts, dining tray carts, physical therapy euipment, chairs and housekeeping carts lined both sides of the hallway.
The unit reminded me of a residential street where cars are parked on both sides. When driving down this street if you are faced with an oncoming vehicle, you had to pull over in whatever space you could find to allow the oncoming car to pass. When someone in a wheelchair approached my stretcher, they had to duck into a patient room doorway to allow me to pass.
Whenever I feel I have no direct route to escape or get out of somewhere I feel cluster phobic. Even though I hoarded myself into a small living space at home, here I felt cluserphobic in this cluttered hallway. Florence Nightingale, the mother of modern nursing even identified that "the object and color in the materials around us actually have a physical effect on us, on how we feel. Francine Jay, a minimalist wrote "Your home is living space, not storage space.” This unit looked like a storage space and was dismal. Experiencing it was overwhelming and chaotic to the soul and left me feeling alarmed that I would living here.
There were many hospital uniformed people circling the nursing desk, and in a room behind it. There were chairs parked against the opposite wall from the unit nursing desk. The chairs were occupied by patients that slept with their neck resting on their chest with a soaked hospital gown from drooling, patients that would reach out to you as you passed by squeeling "help me", patients that fiddled with an donned bib or a button on their shirt while mumbling repetitive sounds; as well as patients that were alert and and observing everything going on at the nursing desk. There was an occasional bellow from inside patient rooms as I journeyed down the hallway. If a person was to think of the most indignant environment for those poor souls, this would be it. They were deliberately placed there on display and living the indignity.
I arrived at my room and noticed a young woman occupying the bed closest to the door. Nursing staff were busily around her, following admission procedures as she was just admitted and arrived in the room just slightly before me. I noticed the television attached high on the wall placed in the middle of the two beds in the room. It was connected as it was televising a channel. I waited a while in my bed not knowing what I was expecting to happen next. Finally a nurse that poked her head through the curtain encircling my roommate and said "some one would be with you shorty." I didn't really care about anything other than how I was going to get access to the television.
Finally a nurse came to my bed and told me that they were short staffed. She said "I can start your admission to the unit but someone on the next shift wold have to finish it." I replied "Okay, but can you tell me how I can access the television." She said that there was only one television per room and that my roommate had paid for it for a week so she had the remote control. "Bugger" I thought to myself. Now what am I going to do. My favourite sport State and National championships were gong to be televised and I needed to watch them. I always followed this sport. I had my favorite teams and teams I hated. I wanted to see my favorite teams win, and more so, wanted to see the teams I hated loose."I will figure this out", I thought. I just needed time to meet my roommate and figure out how the the protocols surrounding access to the television worked.
The curtain between my roommate and myself remained pulled separating the two beds in our room so I could not see her. The nurses left and I could hear her visitors and figured out that she had a father and two daughters there. Eventually they left but the curtain remained pulled and she remained silent. I hoped that a nurse would come to finish my admission process because I needed a commode by my bed; either that or assistance to the washroom. My dinner meal tray arrived which I did not attend to. It was difficult to eat without the head of my bed raised and I had no interest in any input when I desperately had to deal with output.
The dining staff came to take the dinner tray. They noticed it was no touched and asked me if I wanted it left to eat later. I was not interested in that so I told them to take it. Then finally a nurse came and finished admitting me to the unit and arranged for a commode to be placed beside my bed. The nurse got my medication dispersement in place. The commode arrived and with major jostling
between my bedside table and my roommate's bedside table it was placed as good as possible for me to transfer onto it. The curtain remained pulled for the remainder of the day so I could not introduce my self to my roommate and get her on board with sharing the television remote. I accepted defeat in the battle of the television for the first day, took my bed time meds and decided to drift off to sleep.
As I was falling asleep my thoughts mingled around in my mind about my illness, where I was, and wondering if I would get better. "Would I be able to walk again?" I wondered. My thoughts then shifted to things I could be thankful for. At least my brain and thoughts were clear, and I still have perfect use of my hands. If I had to, I would use a wheelchair for mobility and get a job in my field at a management level using by intellectual skills and hand function for typing emails and documents.
The next morning I woke to the cartoons on the television. I do not have any children who watched television, so these cartoons were new to me. Cartoon after cartoon was televised and then I realized my roommate had the television programmed to the cartoon channel. The curtain was still drawn between us so I had no access to my roommate or the television remote control. I watched the csartoons and found them very boring. I figured out the plot formula that was used for cartoons; the characters got into some kind of dilemma and a hero always saved the day. Throughout the story there was a lot of repetition; too much for me. Play out one scenario and I get it. No need to repeat the same scenario with different situations before the hero saves the day. The cartoons; Ben 10, Hello Kitty, Clarence, Squirrel Boy, Puff Girls etc. were all aliens to me. The only saviour of the channel was the occasion refreshing episode of Peanuts and Calliou.
As the day progressed, something happened that was far more serious than having to watch cartoons. My left hand started to tingle and before a nurse attended to me so I could report it, my right hand began to tingle. And there it was. Just as quick as a minute, I lost function of both hands. Now, all four limbs were effected by some mysterious disease. I could not walk and now I cannot write or eat. When I tried to pick up a pen or utensil from my overbid table, my hand fell flat on the surface and The scenario of my illness repeated itself, first with my legs then again with my hands. I wondered if there was a hero to save me.
Devistated by the new deterioration of my body, my hands, I refocused my thoughts to my pass to attend Christmas at my sisters which I looked forward to. Diane has Christmas every year for the whole family; my other sister Trisha and her family, and my two brothers James and Carl and their families. Christmas is my favourite time of the year and I put days of effort into it prior to Christmas Day. In fact, getting ready for Christmas Day was the part of the season I most enjoyed. I put a lot of thought into what gifts I will give and spend hours wrapping them. My gift wrapping is so eloquent that people don't want to open them. This Christmas though getting to my sisters for dinner is all I will experience of the magical spirit.
My mind when to what I would be doing if I was not in the hospital. Part of the pre-Christmas preparations I really enjoy is making Christmas decorations. I end up giving them away because they are wasted in the clutter of my house. One year I decorated Trisha, my sister's place. I took over all my decorations including, garland, pine cones, glittered pics, spray paint, faux snow and ribbon. I took over so much that the decorations overtook their home. It got late in the day and although I had decorated much of their house, there was still a lot of decorations yet to be used. I never do anything fast. Everything I do requires much thought and planning. I could tell Trisha's husband Blair was getting agitated and wanted things to wind down so he could go to bed. I moved all the decorations that were not used into the garage to be sorted and bagged, so they could go to bed. I would then quietly leave and lock the doors behind me.
While I was sorting the decorations in their garage, I remember the sick feeling in my stomach and how I felt well out of place. Something I could do to for my sister ended up being a burden on them. If I had taken just enough decorations to do her stair railing and maybe a wreath, that would have been good enough. Instead though, I took all my decorations I had from my house in an attempt to move that part of my hoard where it could be used. While I was decorating Trisha asked me why I didn't put this much effort to decorate at my place but I could not tell her there was no place in my house to work on decorating never mind having a place to display the Christmas my masterpieces. I accumulate to decorate, but don't decorate.
My mind came back to reality as I focused on the Cartoons on the television and then thought about things that needed to be done for me to go out on my pass for Christmas Day. Trisha's family would pick me up and take me to Diane's home which was in a rural area an hours drive from the city. I was given the option of a day pass where I had to be back by eight in the evening or an over night pass. The nursing staff needed to know so they could dispense and give me the medications for the period of time I would be away from the hospital. I knew I would be back Christmas evening but eight o'clock meant that I had to leave Diane's at seven. Considering the early check in time for the day pass, I told them I wanted an overnight pass. That way they would not be expecting me until the next day and I could come back as late as I wanted. Good planning I thought, and things were in place for tomorrow, Christmas Day.
Finally the curtain between me and my roommate was pulled open. I looked over to the very tall, thin and beautiful woman. Our eyes met and I said "Hi, my name is Autumn" She replied that her name was Joan. I got right down to my most pressing matter, the control of the television. I asked her if she minded if we switched the channel from something other than the cartoon channel. She began to look for the remote control on her overbid table and could not find it. "I don't know where it is" she said. I suggested to her that she look for it in her bed. She felt under her pillow and under her covers. Finally she found it between her blanket and sheets. She looked at it and pushed some buttons which did nothing to the television. "You can have it" she said "I don't know how to use it. I could not reach it as there was too much room between out beds so I pushed my overbid table over to her. She placed the remote control on the table and I wheeled it back to me. "I have it" I thought to myself but at that point I realized that my roommate was dependant on others for decisions. I would always make sure the television was on a channel she agreed with I thought. I would help her as much as I could I pledged to myself , and that was the beginning of a survival relationship for both of us in that horrid hospital unit.
The next day was Christmas Day. I woke up with a little spark in my heart. It was short lived as the vampire (the Laboratory technician) arrived to poke me and take some blood. My arms were like a pin cushion. I had been poked daily along with a couple of I.V.s that by now had been removed. I had become used to these pokes. "Merry Christmas" I said to him,, "to bad you have to work today. So my day began with a poke and then I said greeted Joan with "Merry Christmas." " Is it Christmas" she asked. "Yes, " I replied. I told her that I was going out to my sisters and relayed to her that I hoped her daughters came to see her. "Maybe" she said in a way that seemed like she didn't know what to expect that day.
The nursing staff provided a walker for me to use at Dians's and a wheelchair for Trisha to use to get me to the front entrance of the hospital to the vehicle, and from the vehicle into Diane's house. The nurse told me to check at the nursing desk before I left and there she would give me the medications I needed for that day. Things seemed be be in place for my day out until I told the nurse I had diarrhea earlier that morning. Big mistake. She told me I could not go out until I could produce a stool specimen to test for c-diff, a very contagious bacteria. My sister would be there soon to pick me up so I needed to get this done in a hurry. Producing a stool specimen however, proved to be difficult. There was nothing to produce. I was on the commode and grunted and groaned and pushed so hard I almost lost my eyeballs. My sister arrived and had to wait. The nursing staff was pretty firm about me producing a specimen before I could go out. After looking forward to this so much and now it could be twarted by the fact that I could not poop.
After the nurse saw me try as hard as I could to provide them the specimen she told me that they would over look the hospital policy and that I could go. "GREAT." I thought with relief. My nurse transferred me into my wheelchair and I rolled my walker in front of me as Trisha pushed me in the wheelchair. "We have to stop at the desk for my meds" I informed Trisha. So stopped at the desk we did. Trisha was right at the desk and she left me in my wheelchair in the middle of the hall. Trisha reported that she was taking me out. "She has an overnight pass?" the nurse asked Trisha to confirm the details. "No" Trisha said, "She will be back tonight. I tried to get Trisha's attention to explain to her why I had said it would be an overnight pass even though I would be back tonight to allow me to get back later. I could not get Trisha's attention as her tone of speaking to the nurse became louder and more firm. "She will be back tonight" she said. Finally I spoke up loud enough so the nurse could hear me. "Yes," I said, " It will be an overnight pass". Trisha threw up her arms, then looked at me and said, "Whatever, but you will be back tonight".
I felt guilty about the altercation between the nurse and Trisha and then between Trisha and myself. The guilt was not because I was dishonest with the nurse about the length of my pass, but because I know why Trisha was so firm about me coming back to the hospital that night. I was because I had overstayed my welcome many times at her place including the day I decorated her home with Christmas decorations. I had a habit of not wanting to go home because I knew what I would be going home to and I was avoiding that. Trisha did not want me ending up at her place overnight. I felt like a victim because Trisha did not allow me my voice in the matter without questioning my decision. and I felt guilty because I knew why Trisha did what she did. And in the end I thought, "what would it matter if I stayed overnight to extend my Christmas experience and that hurt me. The nurse gave Trisha my meds and off we went.
As Trisha pushed me in my wheelchair to the entrance to the hospital, I explained to her why I asked the nursing staff for an overnight pass. Even though she then understood my decision, she remained firm and curt. I think she was a little agitated because she and her family waited for me to poop and held them up. Once in the vehicle with her husband Blair and her kids, I felt better. Blair was always cheerful and her kids while playing on some sort of electronic games, seemed happy to see me.
It felt good to experience fresh air, even though it was cold. I love cold air as it seems to kiss my cheeks leaving behind redness as if it was lipstick. I was enjoying the country scenery on the way to Diana's; the bright winter sun dancing off the thick quilt of snow on the ground and the occasional Christmas lights when we would pass farms. Then Trisha informed me about a family meeting that was going to happen after the Christmas season. She said that Diana and herself would be there. Not knowing exactly why the meeting was planned, I said "It will be good to firm up some decisions about my future". I knew decisions would be made as that is what meetings are for, communication and making decisions. Trisha replied "Oh, I don't think you will be happy with how it will go" still sounding firm and curt. At that point I didn't want to think about it. This was Christmas Day and I was going to enjoy it.
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