Chapter 2 — Sorry, I can’t come to the phone right now.
When we get to the hospital I am met by a specialist stroke nurse, she takes me to the Acute Stroke Ward where my assessment will be carried out.
I was able to complete all the physical tests, although it was confusing because my left arm still didn’t feel like it was mine. All of my body didn’t feel like mine. I didn’t recognise ‘my’ body at all. It was as if I was living outside of myself. So the overwhelming, terrifying, confusing question I kept asking myself was, ‘If I’m not in my own body and I’m not dead, where on earth am I?’
Then the questions from the Nurse began as she carried out her assessment. It was one particular question that confirmed that my brain wasn’t working properly. She pointed at a phone and asked me what it was. I stared at the phone. I knew what it was, but I couldn’t remember what it did or what its name was. It was on the tip of my tongue, I wanted to say it out loud, but I lost it again! This experience scared me.
My mind was racing; I knew the object made a sound, I didn’t know what it meant when it made the sound. ‘Bleep bleep.’ I told the nurse. ‘Yes, but what does it do?’ An excellent question — what DOES it do? Why couldn’t they tell me instead of staring at me, waiting for me to understand? As time passes, I began to feel panicked. I knew I wasn’t stupid; I have two university degrees, so why couldn’t I tell the nurse what this object was? I felt very frustrated.
Sweat collected on my back as the nurse stared at me. I stared back; I had a headache. My husband wanted to answer the question for me, but the nurse stopped him. I was grateful for the extra time, as this allowed me to try and figure out what this object was. I tried to think logically, it was an odd shape, and it would make a beeping sound. I suddenly answered ‘You smoke into it. Wait no you speak into it — I don’t know…It bleeps’. The Nurse didn’t ask any more questions; I was then informed that the hospital team had requested an MRI scan for me.
The MRI Scan confirmed that I had indeed had a stroke and it had taken place in the left central part of my brain, visually on the scan, it looked like a small firework had gone off.
The Consultant confirmed I had broken my brain, temporarily, but it would mend itself, I’m told with some confidence. I didn’t need any speech therapy as I could talk and I knew immediately when I was using the wrong word. I could speak but it felt taxing on my brain. I couldn’t speak quickly, I had to think of every single word I wanted to use. It was like being fluent in a second language and English was not my first language anymore. That is the closest I can get to describing it. I didn’t qualify for physiotherapy either as I could still use my left arm, despite the weakness, I felt in it.
I was assigned a specialist nurse and given a helpline number to call, anytime; day or night and I was also given leaflets from the stroke association to read at home. We left the hospital feeling shocked and decided to get a bite to eat to try and take it all in.
Speaking on the phone proved to be a tough challenge that I had to overcome. I didn’t understand it for a while. According to my stoke brain, a phone was the work of Satan. I remember that I could not use it due to pure fear, I remember the phone ringing a couple of days after my stroke. At the time I felt like the voice at the end of the phone was going right through me, rattling around in my head. It was so deafening; it had to be some form of torture! As that thought was ringing in my head, I threw the phone at my husband in disgust and said, ‘you smoke. I don’t smoke it. I don’t like it’.
It took me a good two weeks before I was brave enough to try using it again. When I did phone a friend, I was only able to speak to her for five minutes before I had to hang-up. It became too exhausting to speak any longer. My brain was looking for her face, but I couldn’t see her — so how could I have heard her? I wondered how it was possible to hear a voice without being able to see the person. Does the person have to shrink down to fit into the phone? At this time I still considered it to be a wretched, horrible object, with sharp edges. I could text fine though and seemed easy to do; so this is how I chose to communicate. If anyone wanted to speak to me, however, it had to be a face-to-face encounter.
I found that after the stroke I suffered from this feeling like I wasn’t in my own body. It wasn’t mine anymore. t would be almost a year before I began to feel like I was ‘back’. I could walk OK; I felt weak inside though and this caused me to move cautiously and slowly. I had to completely give up on wearing high heels for a while. I would get dizzy and confused being in them. My brain got frightened by the odd sensation wearing them caused me. I felt like I was constantly drunk. My balance was shocking, I fell over quite a few times and even today I still work on it, by going to Yoga and Pilates. One day “ I will get there” and as time goes on I feel less “drunk” in my movements.
One of the most embarrassing incidents occurred when I went out to get some food from the local supermarket. At the time I was banned from driving by the DVLA due to the stroke. So, I was walking along the pavement on my way and went past the JD Wetherspoon pub. As I walked past it, I went splat. I was lying flat on my face. I have no idea how it happened or why. I picked myself up off the floor and as I stood up I remember seeing the passers-by looking at me. I felt paranoid and worried that they would presume I was drunk, I imagined them saying ‘One too many for her! It’s not Christmas anymore lass!’ I felt so humiliated by my body, I went straight back home and cried. I couldn’t believe what was happening to me.
It felt like my brain, and I had, temporarily, split into two separate identities and I was no longer in control of my own body. ‘I’ felt as if I was my soul and my poor brain was my body. As my brain tried to come to terms with the stroke, my brain and myself would talk to each other. We were trying to merge our two identities and figure out what had happened to us.
I have one memory in particular. It was the third-night post-stroke, and I awoke in the dark. I had no idea what time it was. All I knew was that it was pitch black, I was in bed, and I needed to pee. Gingerly, I made my way to the loo, moving very slowly with both my hands outstretched in front of me. I felt disoriented, dizzy, despite being in my bedroom a wave of nausea ran over me. I sat on the loo in the dark, confused, trying to understand the recent event that had changed my life.
Out in the darkness, a small voice simpered, ‘Sophie….?’
This voice; I do know. ‘Yes, Brain?’ I softly reply.
‘What happens if I can’t fix this?’
‘You’re going to have to, Brain’
‘But what happens if I can’t, Sophie? What happens if I can’t fix us? What will become of us?’
‘Well, I guess we’ll be stuck down here in this rabbit hole, just the two of us…’
‘I’m frightened, Sophie. I’m frightened.’
‘Me too, Brain, me too.’
At that point, my brain began to cry. The crying turned into sobbing as the fear, panic and nausea washed over Brain.
My face was wet with the tears that Brain had cried out of fear, tears dripped down my face. My broken brain and I were sitting in the dark, sharing this moment. My husband was sleeping in the other room; I didn’t want to wake him. I flushed the loo and made my way back to bed and slept for eleven hours straight.
Around this time I also had funny daydreams or confusions. I wasn’t confused all the time, but I could easily drift off into a daydream or confusion. Although at the time they felt genuine to me lasting a couple of seconds, I would quickly snap in and out of them.
I remember one in particular- I thought I lived in a big, high-rise building in Hong Kong. Upstairs from me lived Mr. and Mrs. Smith who had a baby boy. Mr. Smith was Chinese but was known by the name Mr. Smith. I didn’t know why. Mrs. Smith was English but had lived in Hong Kong her whole life. She was a terrible cook and often burned everything she made. She could be very disorganized, but I liked her a lot. I had never been to Hong Kong but in my daydream it felt real, so real that I can still see her face even now. It’s scary how real they feel.
Another time, I called out for my Dad believing him to be in our basement. (We don’t have a basement in our house) My husband told me that Dad didn’t live with us. I am silent, but I didn’t believe him. I am convinced that my beloved father is downstairs. I go looking for him and search for the ‘Secret’ door in my basement. Before I had found the door, however,I snapped out of it.
Soon after my Stroke, the nightmares also arrived. This was when I did venture further down the rabbit hole. I was going deeper down, much, much deeper down.
For the next instalment please read chapter 3!
