LEGS ON WHEELS ' LABELLED-DISABLED'
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Part 2.... Chapter 3.... 2007

23/9/2016

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A surgeon who took an oath to save lives, walked in to my room unexpectedly today. I finally got to meet the man who saved my bacon. The one who retrieved me from my death. He introduced himself politely, almost in a whisper, then briefly without me really understanding much of what he was saying at the time, explained the mess I was in when admitted to Morriston Hospital on the 16th July 2007.
He finished off by saying, “It was a miracle you survived Amanda. Even more of a miracle that you survived with no brain damage”.
He didn’t really say much more, possibly because my daughter was with me, and he knew she had been through enough already.
 
He had to make the decision to act quickly, and he put me into an induced coma.
There was no family contact information available at that time. So it was all on him and his team collectively. There is such a huge thank you in my heart to all of them for doing what they did. Trusting each other’s knowledge and fast decision making. But in my head right now I don’t thank them. I don’t want to be here. My life, what life…. I don’t know what my life is now apart from fucked and taken away from me without even knowing how…. I don’t fucking know why…. Arrrggghhh!!!.... ;-( 
 
Now I’m going to try my best and get a bit savvy with the medical terms the Consultants are throwing at me, regarding my injuries. So here goes….
 
I had a very serious head injury, called “Diffuse axonal injury”. Meaning a traumatic brain injury from a force that occurs when the head has rapidly accelerated or decelerated. Causing the disruption of neurons and not allowing them to communicate with one another. A high percentage of people with this type of head injury never regain consciousness and those that do have a high chance of permanent brain damage. I was in that category.
 
On my head I had two scalp lacerations. One at the back not far from my ear on the left side, and the other on the top right just off centre. My whole head and face were so swollen it was as round and as big as the moon, my daughter tells me. She said she couldn’t make out if it was me....
It was at this point the Surgeon told her and her Dad that I could possibly have brain damage as the injury and swelling on the brain was causing blood to travel down towards the brainstem that connects to the spinal cord. Sending all the information into mayhem.
 
Trying to write this right now isn’t easy. Tears are falling onto the page while I’m thinking of what my daughter was seeing and going through…. To be told that her mother was in a critical condition and could die, or if she survives could have severe brain damage as well as paralyses. Well, I can’t even begin to imagine how my daughter was feeling and thinking.
 
On the left side of my face my cheekbone was shattered with my eyeball inside the skull, so a “Zygomatic complex ORIF”, was done under general anaesthetic on that side. Which basically means they put my eye back into its socket and rebuilt my cheekbone and eye socket with tiny screws and stainless steel or titanium I can’t remember.
 
The head injury was bad enough, but my spinal cord had been severed in enough places with a lot of fractures. I was paralysed from T10-L1, meaning paralysed and totally fucked from just above the waist all the way to the toes.  The “T” stands for the Thoracic Vertebrae and the “L” stands for the Lumbar Vertebrae. To stabilise the L1 fracture they put in a “Hartshill Rectangle”, which is a stainless steel rod that is attached to the lumbar area of the spine, by stainless steel wires called the ATLAS cable system to help the bones fuse together.
I was in a coma in the ICU for quite some time, needing prolonged ventilation, and to be fed a tracheostomy was preformed to enable weaning….
 
I’m still not feeling 100% ok. I keep trying to mentally feel that my legs are still connected to me, but as much as they are visually, they are not cognitively. Being here in a room and not on the ward is giving me private time. Time to focus, on what I have yet to find out.
 
Outside my window, there is a little enclosed court yard with a bit of grass, a few trees and some scattered bushes. I have a bush outside my window and it’s the home of god knows how many little birds. I think they are Finches, I don’t really know, but every morning at precisely 4.40am they are my alarm call.
I’m stretched out flat on my back, in the same position I was in the night before, and the day before that, and that, and every fucking day and night since I opened my eyes to find myself in this hell. This is not me....

I’m so still and silent with body and mind, inside and out. All I feel are my tears rolling down my face slowly, then they up a gear, running so fast I can’t stop them and I don’t try.
I make no sound with my crying. Tears, they just fall as I watch the birds and feel the sun warming up my face through the window. I have no order in my day, apart from watching the little birds and feeling the morning sun remind me that I am still here. As quickly as the birds have woken up and my tears have poured, it is all over. The birds have left for the day and my tears have dried up before anyone sees me….
My mind is empty, truly empty, very morning when I watch those little buddle’s of energy flapping their wings, darting in and out of the bush, rustling the leaves, chirping, cheeping, singing out to each other their order of the day.
 
I don’t know why or what has brought my attention to these little creatures every morning for the past week and more, but it does feel like an escape before I start my day. An escape from my own fear? Maybe…. The fear of what’s to come….

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Part 2.... Chapter 2.... 2007

12/9/2016

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My scattered memories of being on ward E are just that, scattered and random.
I remember my daughter and partner were there and if my memory serves me correctly, two friends were also there at some point.  Around that time the clippers had been brought in to do the deed I had asked to be done. It was time to get my head shaved. My partner couldn’t finish the job so my daughter took over and finished it for him. Once the head shave was complete I felt free. Even to me using the word “free”, to describe a feeling is weird, but I did feel free.

One of the patients on the ward had noticed with interest at me having my head shaved. She couldn’t speak English so sent her daughter over to ask if they could borrow the clippers, because her mother felt inspired by me and wanted to do the same. I said yes for the clippers as I looked over to the lady, on that we both just raised a hand and nodded to each other, no words where needed. We knew what we were saying, meaning and doing, if
no-one else did.

 
I felt new and ready to get up but I couldn’t, I couldn’t move. I wanted to get up and go to the toilet but my body wasn’t allowing a connection with my brain to get it moving, and I didn’t understand why.
I looked at those sitting and standing around my bed, they were looking at me with their mouths open, connected with a look of complete despair in their eyes. I asked out loudly, “Why can’t I move?”. I asked again, waiting for a response no one was giving. My daughter was the one who spoke the words everybody else couldn’t bring themselves to say.
 
She said it as it is, “Your paralysed Mum”, ….  I answered back in the same way, with “Ok”.
 
From that moment I didn’t know how to concentrate on any of my thoughts. They seemed to be in control of me. Stopping me thinking past what they want me to see, which was nothing. My mind had turned into a labyrinth, the network of pathways and passages all leading to the nothing. But there must be a way out, there must be some understanding of why I’m here. That was all what my thoughts were and still are screaming out inside.
 
Paralysed…. How? I asked the question but no-one gave me the answer. I was in silence again. My friends left and I remember hearing the tea trolley rattling its way past my bed as I kissed my daughter before she and my partner left to go home.
 
Another day on ward E and I was hating it. I remember shouting out at the nurses, “I want to go home, why are you keeping me here. Why don’t you get me a wheelchair so I can just go home?. I'm fine”. It got to the point that they were just ignoring my cry’s and that started me thinking. It was the first moment of self-realisation and will power since I'd woken from the coma and shaved my head. I will get up. I will do it by myself.... but I couldn’t, it felt and was impossible. My mind and body are no longer on the same page.

Every thing was so surreal. My partner showed up and I demanded he roll me a rollie, he kept saying no but I got one in the end and lit it. With the curtain pulled around the bed cubicle, one puff and I’m coughing like a dog and I could hear the nurses running around trying to find out what and where the smell was coming from. I handed the rollie back to my partner who disposed of it straight away. I have no idea why I done that, but it did give me my first giggle. 

 
Just opposite to my bed on the ward I noticed a patient who had a room all to himself, and I wanted that room. A very selfish thought I cannot deny, but I wanted that room none the less. I wanted to be in a room and not on the ward, and there was something about that room that I wanted. I can’t remember how long I was on the ward for, but before I knew it the room was mine. I had just got back to Morriston Hospital after being down at Singleton Hospital all day, checking how things were progressing with my left eye. Then on arrival back at Morriston, they told me the good news and moved me into my room with an en-suite ;-).
 
Now I have a room of my own with pen and paper in hand, it’s time to write, write and write more. I’m hoping the more I write the more my memory storage banks will be swayed and something will spring back to tell the truth of what has happened to me. But most of all why???

​


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Part 2.... Chapter 1 – www.legsonwheels.com                        “labelled-disabled” By Amanda Crowley

5/9/2016

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I hope you will re-join me on my journey of acceptance, patience, endurance, and the will power of staying true to who I really am, throughout my mental, emotional and physical recovery.....
​Part 2…. Chapter 1…. 2007
 
Hello thoughts. It’s been a while since we were together. I don’t know what to say, or where to begin. I don’t know what’s happened to me…. Maybe you can help me remember how and what has caused “my” dis-connection of mind, body and soul.
At this moment in time I feel very lost and totally alone.
 
I have a huge bundle of questions in my mind that I think are going to stay with me for a long time, if not forever. How long depends on the thought I guess, be it big or small. I’m just waiting for my memory to come up with the right answers. Inner feelings that gather part of my thoughts and manifest my questions are wanting me to cry my mind out. But not telling me for why.
 
It has taken a while for me to be able to hold a pen to write. Now that I have paper and pen it feels strange to write about my life when a part of it is missing from my subconscious and unconscious mind. That gap of my reality, that completely empty space is becoming nothingness.
 
I woke up on ward E in Morriston Hospital, and was told I had been in ICU and was lucky to be alive. I was dazed and very confused of where I had been, where I was and why I was there. How could this be, I couldn’t physically move my body. At that time it didn’t register that I could be or was paralysed, plus I hadn’t been told.
 
My mind felt strange. My body felt a lot of pain. I moved my hand to scratch my head and then I felt it. Dried up scabby blood stuck to my hair, a lot of stitches and hair regrowth pushing through the scalp in two places. Was I in a dream? It felt like I was. Nobody was talking to me, they were all just looking at me, while racing around on what seemed like a carousel. Their mouths moving but I could not really hear or make out what was being said. All sounds were muffled, obstructed in some way. Telephones ringing, buzzers buzzing, doors banging. Nurses, doctors and family visitors seemed to be rushing passed my bed, not paying any attention to my vocal outbursts and on looking back I’m not surprised. Visitors probably thought I had mental health issues but the nurses and doctors had seen it all before.
 
While I lay there waiting for someone to respond to my out bursts, I remember I’m trying to think of how I can put everything right even though I don’t know what went wrong.
My thoughts didn’t seem to be my own. A confrontation was going on inside my tiny brain, with each cell belonging to either the left or the right brains hemisphere, scrabbling for memory recognition and information to make sense of all around me. Searching everywhere and anywhere my brain function would allow, to give me answers to my unknown.
But nothing came through, my brain didn’t have the strength, I just fell back into a deep, deep sleep.
 
I didn’t know if I’d been asleep for a few hours or a few days, but when I did awake I remember my daughter and partner were there. Silence was all that my ears were picking up. I don’t know if these memories, only a few weeks old, are even in the right order. My daughters face looked very subdued, but at the same time she had happiness bursting with relief and love that her mother was still with her.
My partner looked subdued also, but seemed somewhat aloof. I asked limited questions, I can’t remember if I had any answers. I looked at my partner, waiting for him to say something that would help my thinking process. Everything was so confusingly strange.
The only thought and decision I remember making at that time with strong conviction, was that I had to shave off all my hair.
 
I remember a feeling that showered my entire being as fast as lightening breaks through the clouds and hits the ground. It was a very strong realisation to me that the Gods and Goddesses of our thoughts are just that, thoughts.
 
God does not exist. Man is to blame for keeping me alive, and not letting me find out the truth of whether those heavenly pearly white gates were ready to open for me.
I laugh at myself with this thought because I've never believed that there is a god. Am I supposed to believe in him before he lets me in???
All I know is that I continue to exist because of man’s intervention with science. Not Gods intervention with love and it’s “not your time yet Amanda” …. Doctors took that decision, and I hate them for it…. 


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