After spending such a long time in hospital recovering from the brain haemorrhage, once home, I was very excited about the prospect of heading out into the 'real world' once again. My only concerns about my re-entry into public life was the state of my hair - I was sporting a ragdoll type hairdo, with a small shaved patch at the front, a large shaved area at the back and shoulder length blonde hair covering the rest of my head. I wasn't anxious about my ability to function in public, as to our knowledge, the only issue that I had on discharge was a right-side hemianopia, which is an inability to see in the right visual field in both eyes. Although, this in itself is a big deal, to me the world didn't look any different and I hadn't really registered the impact of only seeing half the world in front of me.
We therefore ventured out into our small rural community the day after I arrived home from hospital to attend a local rugby match. I had friends participating in the game, as well as supporting, so I was really looking forward to catching up with everyone. Mum insisted on taking a camping chair for me to sit in, as well as a blanket to drape over my knees, which embarrassed me greatly. However, she wouldn't let me go unless I agreed to these conditions, so I reluctantly agreed to humour her, because of course I wouldn't actually need them.
The car ride into town was short enough not to cause the same issues as the ride home from the hospital, however, it definitely started the spiral of system overload, as the image of the countryside rushing by proved very difficult to visually process. From there, things just went from bad to worse. On arrival at the rugby grounds (a location that I was very familiar with), I had to work very hard to manage the walk to the side-line on what seemed like extremely rough terrain. Then, as different people came up to greet either my parents or me, I got numerous frights as their looming presence seemed to pop up out of nowhere.
As the crowds got bigger, I continued to become more and more overwhelmed by not only the amount of visual information I had to process, but also the increase of auditory information as well. I found that if I was trying to visually focus on someone talking to me, I struggled to actually understand what they were saying. My ability to respond and communicate with people completely disappeared and I soon found that I couldn't even string a sentence together.
I gratefully retreated into the camping chair and hid myself under the blanket, which seemed to signal to everyone that I was not able to talk to them anymore. I had reverted back to being an invalid, which wasn't a persona I particularly liked, but it was a relief to let my parents take over for me. They however, did not understand my absolute need to have at least one of them with me at all times (something that had developed in the hospital, but everyone had assumed it was simply related to being in a strange environment and would therefore not continue once out of hospital) and they continued to mingle with the other supporters. Although they were always close by, when neither of them was actually by my side where I could see them, I became terrified.
Not wanting to make a scene, I decided to try and focus on the rugby game to distract myself from my growing feelings of anxiety. But this proved completely impossible. I had grown up immersed in sport and had watched hundreds of rugby games, both live and on TV. However, on this occasion, I found that I simply could not follow the game it all. Every time I tried to work out where the ball was, I would struggle as my eyes flitted from one player to another, never actually finding the person that had the ball. Then after only a short period of focusing on the mass of players on the field, I would find myself staring off into an area where no one was, without any idea when or why I had averted my gaze from the field altogether. No matter how hard I tried, I could not make sense of the visual information in front of me and I could not follow the game at all.
By this stage, I was also physically and mentally exhausted. I felt sick, my head was thumping and I was so anxious, I couldn't even find the words to tell mum that I needed to get out of there. Luckily, I didn't need to though. She took one look at me and decided that I had had enough and it was time to head home. I think it is safe to say that my first outing into the 'real world' was not really a success.
Nicola McDowell sustained a brain injury aged sixteen, and for the following seventeen years was unaware that she had CVI. Through a series of blogs Nicola shares her experiences with us.
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