I have a brain injury - this is a typical day!

 

I will have to explain firstly, before we go any further together, that I am unable to string understandable sentences together. I was once able to communicate verbally in a clear and concise way but now I can’t speak the Queens English. My vocabulary is limited to ‘gummnee, gimmnee, gingy, I, mmm, nor, aaarrrgh!’ and other noises that are impossible to spell. My words are a neologism – they are made up and are nonsense. When I do attempt to speak, I sound like a born-again Christian talking in tongues. I do not know what my own words mean although I always know what it is I am trying to say.

 

A Hubpage based on my collection of words would not make any sense to me or to you if they were written down. I can’t type a manuscript and I certainly can’t sit down with you face-to-face and tell you my story. This is due to dysarthria and agraphia. Put simply, my brain does not work as it should do. My tongue, the muscles around my mouth, and the muscles in my right arm and leg are all malfunctioning. My life, thoughts, and observations can only be conveyed to you by another person, someone who knows me very well and who has more words in their vocabulary than I do. They will have to do it by using their imagination.

The understanding of my unique thought processing is subjective and will have to be translated with, at best, an educated guess and a little imagination. The writer can only attempt to capture the essence of my life, interpreted through the observations that he has compiled over the many months that he has spent with me.

My name is Charlie and I have an Acquired Brain Injury (ABI), also known in the USA as a (TBA), Traumatic Brain Injury. This is a neurological condition. I have damage to my brain that was caused after I was born. In fact, it was acquired forty-five years after I was born.

Acquired brain injury is not to be confused with intellectual disability. I am not void of intelligence. I do however have serious difficulty controlling, coordinating, and communicating my thoughts and actions. I have retained a level of intellectual ability. For example, I usually win when playing draughts and I always understand what time of day it is. A brain injury has dramatically varied effects and no two people can expect the same outcome or resulting difficulties. My injury is therefore as unique to me as my fingerprints.

 

I have large dent on the left side of my head that was acquired after living many creative years of life without it. It looks like a moon crater and has variable depths throughout the day depending on my hydration level. I did not order my brain injury from Argos, as an impulse purchase, it simply arrived in my life without my consent on a fatal day when I ignored my own advice. It was the day when I went on a leisurely bike ride without wearing my safety helmet. On that day, it took me just one-second to make a wrong decision that led to the death of the person I was and the birth of an alternative version of me.

 

My accident happened six years ago and I may tell you more about what happened another time, perhaps in a book written by the writer. For now, I just want to tell you about one of my typical days - living as an acquired brain injury victim. I hope you will understand a little more about my type of condition by time you have read this long but hopefully informative hub.

 

The day I will tell you about is a particular Thursday, five years after my accident.

Just another day

As I opened my eyes that Thursday morning, at 7am, I immediately recognised the doors of my teak wardrobe. The wardrobe was facing me on my right-hand side. It is brown with wood grain marks on the surface and forty two thousand almost invisible two millimetre scratches upon its surface. Today, a red tie was sticking out of the gap between the doors. I knew this was not right. I knew it should have been inside the door, neat and tidy and out of sight. From the very moment that I awakened from my dream world, on that particular Thursday, my mind was focussed only on a single understanding - the tie should not be sticking out of the wardrobe.

 

The moment I awake each day, I am not always immediately aware of who I am or why I have bed guards on my single bed. It takes a few moments for my brain to activate and for my world to come into focus and order. On this day, inside my mind, I thought I was reaching over the side of the bed and stretching out to put the tie in its rightful place. Outside of my mind, in reality, I was a twelve stone man who felt as if I had been super-glued to the bed. My body was motionless, a dead weight, acting as if paralysed. My reaching hand was really clenched tight against my chest and starting to shake uncontrollably as if it had a life of its own. It was cramped tight and painful, as it is every morning and not actually reaching for the tie as I thought it was. My anxiety about the tie was off the scale. I could not tolerate it being out of its place. This was the first thirty seconds of Thursday. For many minutes I proceeded to carefully analyse the tie, its colour, the grain of the material, the angle that it was protruding at, and the tiny spec of dust that was clinging to it. 

 

My obsession with the red tie was momentarily broken when a woman came into the room. ‘Good morning Charlie, how did you sleep last night?’ she asked, as she walked briskly around the bed and started helping me to turn on to my back. I uttered words to her that I did not understand. She seemed familiar with my communication. She fluffed the pillows and helped me to sit up in a comfortable position.  She seemed kind and looked very familiar to me.  I took a long careful look at the contours of her breasts under her sweatshirt. My tongue was sticking out, like the red tie, and I started laughing uncontrollably, and very loudly. ‘Give over Charlie’ she said in a stern voice. I just laughed at her breasts. I seem to have a fascination with breasts and can’t resist grabbing them whenever I see a pair.

 

The woman opened the bedroom curtains and told me to shut up and to be quiet. I was shouting at her in response ‘Arrrrrrgh, Arrrrrrgh!’ She was not being mean or aggressive towards me; she was just in her auto-mode. She was the one who had to deal with me, and my injury, every day of her life since the accident. She had opened my curtains on one thousand one hundred and thirty two previous occasions, ever since I arrived home from the hospital.

 

I continued shouting at her aggressively and shaking my fist while she was tidying the bedroom. She ignored me for a little while. Prior to this outburst I had been calm, and only thinking about the tie. Don’t ask me why I needed to shout at her because I do not know. I can’t fathom it.

 

As the day light broke into my room the red tie caught my eye again. It was not in its correct place. It looked untidy and out of order. The woman left the room as I started shouting at her again. ‘The tie needs sorting out woman, why have you ignored it’. This is what I was saying, inside my mind, but she only heard the language of my injured mind through my mouth and tongue that no longer work in unison with my brain or with each other. What she heard was the usual gobbled nonsense. This was very frustrating for me because I just wanted the tie in its rightful place. It seemed to be the most important thing in the world to me at that moment. I could not reach over and correct it. I could not convey the desire to do so. The urge to sort the tie out was overpowering.

 

At 8am, my darling wife Sandra came into the bedroom. She looked familiar to me with her kind smile and beautiful eyes. She looked like the first woman and then I realised it was her who I had been shouting at earlier. ‘It’s time for your meds Charlie’ she said as she placed a tray on my lap.  Sandra is the woman I live with. I have photographs of our past life together. We were a happy couple. I know she is someone very special to me. She placed the tablets on my duvet cover on a paper towel and in the exact position that I like them to be and she then gave me coffee. She carefully spoon fed small amounts into my mouth stopping only to give me time to select a tablet and place it into my tongue. Swallowing is easier than it used to be. I do not choke these days so I no longer need that dreadful sucking machine that sits dormant under my bed gathering dust.

 

Sandra stood next to the bed leaning awkwardly over my right side with her back in a bad position as she does most days. Lovingly and patiently she made sure that she did not spill the coffee on my chin. The last time she spilled a drop on my chin I hit her and tried to grab her hair. I took the tablets one by one and in size order. This took about fifteen minutes. Sandra then helped me to get out of the bed and onto the contraption with wheels called an R-Jo. It was time for the first loo visit of the day. As she struggled to manoeuvre me, pushing and pulling with all her strength, she spoke to me about the day she had planned ahead and also about the weather. I listened carefully to her every word. Sometimes, when I am in a mood, I ignore her ramblings and shout and point, and sometimes she also ignores mine. We just get on with it. This routine has to happen every day, at the same time, in the same order, and in the same room. This is how we are, a man and wife, functioning as a couple trapped in a nightmare. She is my main carer and the person who has clearly sacrificed the past five years of her life for me. Sometimes I pull her towards me and hug her to show that I love her and appreciate her. Our relationship is primarily that of carer and patient.

 

At 8.24am, Sandra came back and helped me to get off the toilet and back onto the R-Jo. She wiped my bum and washed my hand. I wondered who had wiped hers and washed her hands that morning. I know I didn’t. Then she put me back in bed, with a urine bottle placed between my legs, and she then turned the television on for me. ‘Everything OK Charlie, are you comfortable?’ she asked me as she headed back towards the door. Today I ignored my strong urge to shout at the curtains, even though they were not exactly positioned as I like them, uniformly perfect. I shouted at Sandra again and pointed towards the wardrobe. The red tie was still bothering me, but she handed me a tissue and told me to stop shouting. She walked out of the room with a slight limp and rubbing her hip. She seemed to be in pain for some reason.

 

I then lay in bed watching television and laughing loudly at the usual array of images on the screen that were showing war scenes, accidents, and crashes. I could hear noise and movements outside of my room. I could still see the tie sticking out of the wardrobe door. It was poking into my room as though it belonged there. It seemed to get bigger the more I looked at it. I shouted and pointed at it many times but no one was present to witness my anger and frustration.

 

I lay in bed and listened to Kirsty, as I do most mornings, as she was moving in and out of her bedroom, which is opposite mine. She was getting ready for her day at university.  I also listened intensely to the noises coming through the bedroom wall from the kitchen in our bungalow. I heard the kettle being switched on, the taps pouring water, the portable television blurring words, and the bowls and plates being washed in the sink. I listened carefully to the conversation between my wife and daughter. These things happen every day and I listen out for them habitually. This is how I participate in this part of my family’s morning routine. I simply listen and check to see if each event happens in the correct order.

 

While laying in my bed, occasionally laughing again at the television, I started to shave myself with my electric razor. Sandra had remembered to place it in the position on the duvet that I like. Shaving is something I now do for myself. After a few years of being at home I had become intolerable of others doing it for me and I think they had got fed up of me taking an aggressive lunge towards them whenever I thought the razor was chewing my face. Nowadays I just lay in bed shaving away and content in my private world. I make a pretty good job too, apart from the Hitler style moustache that sometimes appears after a few days. At one point in the past, in a well meaning attempt to help me, a ladies hair removal cream had been applied to my chin and then carefully scraped off. I must have looked funny with red blotches and random circles of facial hair. I am much happier now I do it myself.

 

At 8.55am I heard a knock on the front door, coming from the hallway, followed with a very cheerful ‘Good morning’ and an immediate response from the kitchen ‘Morning’.  This happens five days a week. It signals the time of day when people enter my home and spend six hours with me, allowing my wife and daughter to go about there daily life.  I heard another knock on the door and another cheerful ‘Morning’ followed by ‘Morning’ from the kitchen. I shouted from my bed, contributing to the niceties, but they ignored me. I was also saying ‘Good morning’ but it came out as ‘Nawrr gummnee I, I, I’. My words were ‘Charlie-speak’ from the land of Charlie. Clear to me, but gobbly-gutch to everyone else.

 

After listening to the conversations between the staff and my wife in the kitchen for ten minutes or so, I shouted a few times in frustration and anger. Time was pressing on my mind and the urge to follow my routine was overbearing. There was a tap, tap, tap, on my bedroom door. ‘Good morning Charlie, can we come in?’ I just growled at them as they walked into the bedroom and I pulled the duvet over my face. ‘Good morning Charlie’ they said again in unison. I shouted back at them and shook my fist at one of them. I then tried to lunge forward to hit them. ‘Mr grumpy this morning’ one of them said. The other stood well back as I shook my electric shaver at them. I have thrown a few in my time and they have broken into bits against the wall. I hold on to them now and just shake it at them. I spoke to them forcefully in my language. I was telling them about the tie. They kept saying, ‘Calm down Charlie, calm down Charlie, look, it is a lovely sunny day’. I was not listening to them because I just wanted the tie putting in its proper place. I thought that they must be stupid because they could not see the tie. One of them approached me and spoke to me in a very calm tone of voice saying ‘Don’t be so grumpy Charlie’. The other one turned off the television.

 

Usually I have the curtains drawn again at this point of the day, for privacy, but today I did not want them drawn. One of the staff reached to close the curtains and I shouted and growled at them very fiercely. ‘What’s up Charlie’ one of them asked, ‘Do you want the window open?’ asked the other.  This just made me more frustrated so I shouted even louder and continued pointing. After a few minutes they realised what I wanted. I then confirmed that I was happy by uttering my ‘Mmm’s and arrs,’ in an approval tone of voice. I then pulled them over towards me and gave each of them a one–armed hug. One of them responded with a hug back and the other one said ‘Get off me Charlie, you are not kissing me, I am not talking to you’. I knew he was joking so we laughed out aloud together. As they prepared my bed they both told me about the previous evenings they had had with their families and I enjoyed listening to them. I always recognise the names of their partners and their children.  

 

At 9.19 am I gave them my urine bottle. It was full. I laughed and laughed until I nearly started to choke. They laughed with me and then poured it down the loo. Don’t ask me why, but I think wee is very funny. I passed them my pillows and pointed to the electric wheelchair in the corner, which is where I like the pillows to be placed, in perfect order.

These two were my regulars, so they pretty much knew what I wanted without too many words being spoken between us. The day becomes very upsetting and frustrating for me if I am sent people who do not understand me and my routine. I simply have no capacity for patience or for giving clear explanation of what I want so I usually end up hitting one of them and shouting them into a corner because I become so frustrated. Some of the staff in the past have never come back to see me.

 

I now do physiotherapy everyday. I always follow the routine like clock-work. My first session of the day is conducted while I lay on my bed. I follow my own routine now, and at my own pace, with a little help from my support workers. Sandra has been paying a private physiotherapist to visit each week. She has helped me to learn the routines. Left leg to the left and then left leg to the right. Left leg up, and hold to the count of three, and then slowly down. Right leg to the left and then repeat this again slower because this is my bad leg and sometimes it does not move at all. Legs up and legs down. While I do this, one of them rotates my right hand and arm. This can hurt so I often shout out or push them away. In the early days of my injury I would just punch them in the face whenever they tried to help me.

 

When I had finished, on this particular day, I decided that I wanted to get up quickly and get on with the day. My sudden urge to get up was overwhelming. This took the staff by surprise; they were not ready for my energised up and over leap to the edge of the bed. This was something I could not have achieved a few months ago. As I positioned myself in front of the wardrobe, with my knees parallel and my feet flat on the floor as I had been show to do, I noticed the tie again. This distracted me from the job in hand and I again became obsessed with it. I pointed at it and shouted. One of them quickly shoved it away. It was no longer an issue.

 

At 10am, after my shower, I was helped to dress and I had my third visit to the loo. A hand-grip was carefully placed in my right-hand. It was painful and I shouted at them as they struggled to peel my fingers around it. I was then wheeled down the narrow hall towards the kitchen and I pointed the way, giving them my instructions to avoid the door frame and the clothes dryer. As we were passing the mirror I noticed the dog lying on the floor ahead, just outside the kitchen. Without warning I launched into a shouting fit and started shaking my fist at it. ‘Arrrrrrgh, arrrrgh, arrrgh’ I shouted at the top of my voice. ‘Shush Charlie’ one of them said, ‘Leave the poor dog alone’. I have been told that the dog and I used to be best of friends. We have had him since he was a puppy. ‘Poor Buster, you have frightened him Charlie’ said a voice coming from the kitchen. I don’t know why he annoys me so much. He just irritates me. I’ve hit him a few times. The staff usually try to remove him from my sight, before I see him. He usually barks, and I shout, and he barks again, and I then shout even louder as I become more and more agitated. The Staff or Sandra quickly intervene and then wheel me out of his site. ‘Gummnee, gummnee aaarrrgh’.  Stupid old dog, get out of my way!

 

At 10.05am I was wheeled towards the kitchen worktop. These days, I prepare my own cereal. I can stand, balanced on my contraption, and reach to the cupboard. I select the same packet each morning. As I sat back down I straightened the jars on the bottom shelve. I always turn the labels to the front. I think someone in the house turns them around just to annoy me. ‘Do you want the milk Charlie?’ they ask ‘Ahh, gummnee aaahh’ I reply, while pointing, of course I want the milk. I am not eating it dry. It’s the same old routine. I get my spoon and straw from the draw, I shake the cereal carefully into the bowl, and I pour the milk and then the juice into my beaker. ‘Would you like me to take the top off the milk Charlie?’ They ask some daft questions. With my juice poured and my cereal ready I was helped into the wheelchair and wheeled across to the table in my favourite position, with the wheelchair arms exactly parallel to the table edge. I then asked for the paper towel, well I pointed, and they knew what I wanted. I pressed three on the remote control and I watched Jeremy Kyle while I ate breakfast. Sometimes I look at the newspaper while I am eating. I pointed to the toaster to indicate that I wanted the staff to make their own toast. One of staff then asked the question: ‘Do you want to go out in your car today Charlie?’ I just ignored them at first. They know the answer. Why do they keep asking? They asked a few more times so I eventually told them forcefully ‘Nor.’

 

After spooning every last remnant of cereal carefully into my mouth I started slurping my milk from the bowl, which is better than it being spoon fed to me like it used to be. I wanted to make my toast straight away. I like to move from one activity directly to another without a pause. The Staff were busy talking to each other so I slapped the table hard with my hand. That got their attention. ‘Would you like to make your toast now Charlie?’ They asked in unison. I thought that was obvious. ‘Mmm’ I responded.

 

I popped the toast in the slot and watched it as it browned. It took ages before it popped out again. I shouted at them to put it back the other way up and the other way around, the way I like it. One of them buttered it and sliced it at an angle, also the way I like it. I shout and point if they do not butter every single part of the surface. After I had inspected the toast I agreed to sit at the table and eat it. Jeremy Kyle was still ranting on about someone having sex with someone’s mother’s brother’s sister in law. The staff were relaxed and eating their toast when I suddenly slapped the table again and caused a cup of tea to spill over the brim. ‘Arrrgh, I, mmm’ I blurted out. It’s time to wash the dishes, I thought, as I pointed vigorously at the sink. ‘We are not ready yet Charlie, we will just finish our drinks’ they replied, ’Arrrgh, arrrgh, arrrgh, arrrgh, arrrgh’ I shouted back louder and louder, again pointing at the sink. One of them jumped up and said ‘Okay, okay, keep your hat on Charlie’. The other one, the male, did not move. ‘I’ll finish when I am ready Charlie. I’ll bring the cup over.’ I wanted it done straight away, it seemed important to me. Without warning, to them or myself, I started banging my fist on the table and trying to move forward in my wheelchair towards him. I was hell bent on punching him. I shouted louder and growled as the table moved. He remained calm and stood back. ‘No Charlie, you will have to wait a few moments. My tea is too hot to drink. Calm down, I will bring it over to you.’ I wanted to do the dishes and I wanted all the cups in the bowl, straight away.

 

The situation quickly deteriorated as I used my newfound mobility to manoeuvre my chair towards him. I moved quickly and managed to grab his shirt. I shouted and tugged and pulled at him while he tried to move back. The other member of staff was trying to talk to me, ‘Calm down Charlie, we can do the dishes when he has finished. Calm down Charlie, let go of his shirt. Charlie, Charlie, sit back on your Chair, you are going to fall over’. I was out of breath and still tugging at his shirt. The button flew off and the shirt ripped. ‘Charlie, Charlie’ he said, ‘let go and we can do the dishes’. His cup of tea had spilt all over the floor. The chair was on its back and I was out of breath and holding my head. It hurts when I shout and get agitated. ‘Charlie, I am just going to mop the floor. Then we can do the dishes he said’. The other one sat in front of me and held my good hand. She spoke in a quiet voice and helped me to calm down. ‘Charlie, you must not hit staff like that. They will stop coming to see you. He would have soon finished his tea and you could have washed it. You should have waited. You need to say sorry to him, look what you have done to his shirt, and look how upset you have become.’ I calmed down and stopped shaking. As he walked past me with the mop, I grabbed his arm and pulled him towards me for a hug. He hugged me and spoke to me saying, ‘Your not Rambo Charlie, you’re a nightmare sometimes, it’s just as well we like you Charlie. Tomorrow you can butter your own toast’ I again understood his humour, so we laughed together and then I stood at the sink and washed the dishes thoroughly. I then washed the sink, the draining board, the taps, and then meticulously wiped the surface of the counter. I removed every drop of water and wiped away every mark I could see, only breaking my concentration when I shouted at the dog who was sitting outside the kitchen window. It was at 10:46 am that I indicated that I wanted to go to the loo again. Visit number four. One of the Staff was now wearing one of my stripped sweatshirts and he said we would look like twins. We all laughed together at I was wheeled back to my bedroom.

 

I was on the loo for quite sometime, tapping the wall and singing to myself, when I let off the biggest fart you have ever heard. The staff shouted from the bedroom. ‘For goodness sake Charlie, what was that?’ I laughed and strained hard, trying to do it again. ‘You sound like your giving birth to a baby elephant Charlie’ one of them shouted back. I laughed at this and let another one off. This was so funny. I just could not help laughing at the noise. I think farts are highly amusing.

 

The Staff helped me to prepare for the day. I brush my own teeth now, and I apply cream and Vaseline to my face. Same order, same routine everyday. Sometimes we all laugh when I put too much on or forget for a moment where my mouth is. I also choose my own clothes. It’s either a stripped sweat shirt and track suite trousers or plane sweat shirt and track suit trousers.  Personally, I think half-mast track-suit trousers look great with white ankle socks and slippers.

 

Once dressed, and after a fifth loo visit, I agreed to go back to the kitchen and sit at the table. We sat and looked through photographs of my family. On other days we sometimes play dominoes and draughts or look through the newspaper. The Staff often check the employment advertisements while I study the pictures of the birthdays. I sometimes indicate that I want the laptop in front of me and slowly type my name.  

 

C h a R l I e

 

I enjoy looking at the computer and typing my name, providing the screen is at a 45-degree angle. It takes me a while to type but I can do it.  Most days we do something different before lunchtime.

 

At 11am I had my sixth loo visit and then started my walking practice in the kitchen. This is something I have learned to do after many months of practice with standing and sitting exercises. I indicated that I wanted the wheelchair positioned at the end of the counter. I stood up, got my balance and then, with my good hand holding the counter top, I walked ten paces forward and then six paces along the return counter. My steps are slow when I walk and my right foot drags. I try my best to control the shaking as I move forward. I then walked backwards. I often do this part too fast and then lose balance. The Staff say I look like Michael Jackson doing a slow motion moon-walk. I don’t know who Michael Jackson is or why he walks on the moon, but this comment always makes me laugh.

 

After I did this six times, I sat and caught my breath. I drank a little juice and enjoyed the praise from the staff.

 

On this particular day, the speech therapist was visiting me. The staff had prepared the table for his visit. After my seventh loo visit I sat with them looking at the computer and at some of the pictures of me that were taken last summer. At 11.56am the doorbell rang and the speech therapist came in to the kitchen. ‘Good morning Charlie’ he said. I was pleased to see him. ‘Nor, nor, nor, nor, nor,’ I shouted to him as I began inspecting his hands. I always inspect people, don’t ask me why. I can recall almost every blemish and someone’s face and neck and hands, even when I have not seen them for some time. I can remember these particular details about a person but not always what their name is. ‘Give him his hand back Charlie’ they interrupted my concentration, ‘he does not want to arm wrestle today, or play hand-twisting’. I ignored them for a few moments while I had a final close-up inspection of his nails which were a little dirty. ‘How has his sign language been progressing?’ the therapist asked one of the staff. He seemed to act as if I was not in the room and directed his eyes past me and to them. ‘Well, Charlie is sometimes using the Makaton sign for the toilet, but other than that, he does not seem to understand the various signs that we have shown him’. I blurted out my response, ‘mmm, mmm,’ I was telling them that I did not want to use his stupid signs. They all sat around the table, with me in the middle, and they proceeded to talk amongst themselves for sometime, occasionally remembering that I was sitting their and turning towards me and asking ‘What do you think Charlie?’ I sat and listened. Some of their words were familiar but most were just like a pattern of sounds that meant nothing to me. Sometimes I can listen to a conversation and every word is crystal clear and understandable, other times my brain only seems to register a few words. When this happens I can often misunderstand what is being said and I start shouting. Other times my frustration with not understanding anything that is being said causes me to explode into shouting and banging on the table.

 

The meeting was going on for a long time and I was becoming very fatigued. I started to indicate to the staff that I needed the toilet. I was ignored. Everyone was in deep conversation. I tried to communicate again and started rubbing myself under the table. Again I was ignored. My agitation was bubbling inside my head. It felt like I was going to wet myself. This triggered my fear of potential embarrassment. As much as I tried to control the explosive rage that was building up, I lost the battle with it and it took over. I shouted ‘aaarrrgh, arrrgh, arrrgh’ and banged the table, I shouted again, ‘aaarrrgh, aaarrrgh, aaarrrgh’ and I started to lash out and grabbing anything I could reach. I could feel a cloud of rage falling over my mind. My heart was thumping inside my chest and a pain was zigzagging across the left side of my head. My breathing rate increased very fast and I felt off balance, as if I was spinning around. I lost control as I ripped another shirt that I had managed to grab. My good leg was kicking outwards. The table tilted over and the cups and paperwork flew off the table. The staff continued talking to me, ‘Charlie, Charlie, let go, let go, Charlie calm down, tell us what has upset you’ the therapist was looking pale. He had stood up and stepped well back from me. I was raging at him and shaking my fist and putting two fingers up at him. The computer had gone flying across the table and his pen was lying on the floor broken. The staff had quickly wheeled my chair around towards the door and I was pointing towards the hallway, still rubbing myself between the legs. ‘I think he wants the toilet’ one of them said. I was assisted into my contraption and briskly wheeled towards the toilet. I was still sticking my fingers up at the therapist as we left the room. At last, I was on the way to the loo. ‘Gummne, gummnee, gummnee’ are you people stupid I was asking out loud.

 

I sat quietly in my bathroom listening to the conversation in the kitchen. Then I heard the front door close as the therapist left for his next appointment. I shouted out ‘Gummne, gummnee, arrrgh’ Good riddance to you!

 

At 12.55am the staff helped me to prepare my lunch. I was exhausted and just could not be bothered listening to them. They were telling me that they would not use the computer with me in the future. They had assumed, as did the therapist that my outburst was because I did not want to use the computer. This happens a lot to me. People assume. It is a natural thing I suppose. In their World all things are rational and ordered and everything follows logic and uniformity, so they often add two and two together and come up with thirty six. I get very frustrated when they do this. Like on this occasion. I was simply fatigued, frustrated, and worried about wetting myself in front of a visitor. The inability to convey this simple fact had caused my outburst. It had nothing to do with the computer. I like the computer, providing the screen is at a forty five degree angle.

 

After lunch, and another visit to the loo, I indicated that I wanted to go outside. I pointed to my slippers and then to the window. ‘Fancy a walk Charlie’ they asked. ‘mm’ I replied.  My bag was prepared. It has a mobile telephone for emergencies, hand-wipes, a towel, and my key for the public loo inside it. It also has toilet paper, rubber gloves, and a large towel that is used as a make-shift screen for privacy when I want a wee in a public place.

 

They took off my slippers and put on my trainers and then helped me put on my waterproof jacket. I put my own hat on and I was ready. ‘Got the door key’ one said to the other, ‘I’ve got the bag’ came back the answer. I pointed to my feet. ‘Oops, sorry Charlie’ one of them said, ‘I will get the footboards, you cannot go without them can you mate’. We walked up the road and I indicated a left turn. We have a few routine walks in my neighbourhood. I have the long walk, the short walk, and the walk to the cemetery. On this day, I wanted the other walk, the ‘mega’ walk, which is to the local town. This took them both by surprise as I rarely indicate that I want that walk. ‘Are you sure Charlie? It look’s like it’s going to rain and I have not got my purse’ I replied to the question with an emphatic ‘mmm’ and pointed the way. ‘Got your bossy head on today Charlie’ one of them said and I laughed.

 

My walks are not really ‘walks’. At least not for me. For me, they are pushes. I sit and observe the World while they take turns pushing me up and down the various kerbsides. I keep them in check as we go. Shouting out loudly when the wheelchair is not exactly in the centre of the path or when I see a bump or stone yards ahead of the wheelchair. I like to spot the dog muck and I shout ‘dar’ in a grumpy way every time I see some on the pavement. I like to shout at people coming towards me and I wave at them so they realise that I want the right of way. Most of them look perplexed when I do this and quickly step aside. I used to shout at Children too, but I was told that this frightened them, so most times I now remember not to shout. I do sometimes reach out to pat them on the head and this seems to make the parents a bit weary of me.

 

As we approached the town I insisted on a specific route. I know every pebble and every kerb between my house and the first stop of the journey, which is the public loo.

 

My trips to the local town may appear boring and monotonous to others but for me they are filled with activity and information that my brain struggles to make sense of. The noise, the people, the vehicles, the children, and the array of shops, roads, and kerbs are like a kaleidoscope of life that goes on outside of my quiet secluded prison that I call home. I can be overwhelmed with all the activity and sometimes I just shout at everything.

 

On this particular trip, having followed the normal route around the town, we visited the Fish and Chip shop. Normally, I am wheeled straight from the pathway and into the narrow space in front of the hot fryers in the shop and I always point to what I want. This day was different; we were running a little late and when we arrived the shop was full of customers and there was no room for my wheelchair. One of the shop staff saw me outside and shouted to me. ‘Hi Charlie, I will put a fishcake in for you, it will not be long’ I know she was just being helpful, but without realising it, she had caused the whole line of customers to turn and stare at me. Well, I am used to being stared at but I do not like it and I felt embarrassed. I recognised some of the customers from when I ran a business in the town. I was trying to control my urge to go into the shop, like I would usually do, but my routine had been broken and everyone was staring at me. I was becoming disorientated. The shop itself is on a very narrow high street, so the footpath it not very wide. This caused me even more concern because people were pushing past in a hurry and a young mum was struggling to get her double buggy past my wheelchair. I was worried about her children and the traffic passing very close. While this was happening I was simultaneously feeling more and more exposed as people were pushing past me as they were trying to get inline to order their fish and chips. It was as if I was invisible. My thoughts were narrowing to the single pressing issue of my lunch. How was I going to be served if I was left in the street? Rage was building inside my head and my patience with everyone around me was diminishing fast. A man stepped out of the shop carrying a plastic bag. The bag looked like it was going to hit me in the face as he pushed past. At this point I lashed out and hit the bag hard. The man, who looked like a builder, was a big chap. He turned to me and said ‘Hey, there is no need for that, just because you are in that thing’ referring to my wheelchair. The male member of staff quickly stepped in front of me and spoke to the man. I did not hear what was said, but the man apologised and walked away.

 

After we had eaten our lunch in the square we headed home, again following a very specific route which includes a section of road were I have to be wheeled towards oncoming traffic. This is because I do not like that part of the pathway. It’s too narrow and bumpy for me and I shout and lash out when staff try to wheel me along the safer route.

 

At 2:40 pm we arrived back home and I went straight to the loo. The staff put my things away and then wrote their daily report. This is something they have to do everyday, even if no one ever seems to read it.

 

At 3pm each day the staff say goodbye. I shake their hands, in my own special ritualistic way, and off they go back to their own families. This part of the day signifies the time for my second medication and Sandra, who always returns home at this time, again helps me to drink my coffee and take my tablets. Same order, same routine, the way I like it.

 

When the staff have left, and I have taken my tablets, I usually watch my favourite programmes on television. I often fall asleep between 3pm and 5pm. I eat at 6pm and then go to bed around 7pm.

 

This day was no different, in fact, it could have been any day – they are pretty much all the same to me.

 

Writers note:

Charlie is a real person who I have the privilege of knowing well. I have changed his name to protect his identity. I was given permission to write about him. Charlie is continuing to improve with his mobility and general communication.