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Nicola McDowell’s Blog (2)

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.

A New Normal

Waking up in a hospital room with no memory of how you got there is quite a frightening experience. I don't actually remember the exact moment I woke up, but I do remember the frantic search as I tried desperately to find something familiar in the room that would help me to make sense of where I was. Without knowing it, I was relying on my brains non-conscious ability to turn what I was seeing into a 3D map of the environment (as described in Gordon Dutton's Blog 5) in the hope that the overall picture would make it all fall into place.

But what I also didn't realise at the time, was that this amazing, non-conscious automatic process, that had always worked perfectly for me in the past - was now not working as well as I needed it to. It was giving me incorrect information about the world around me. It's a bit like a GPS system that hasn't updated to a new road layout. It leads you to believe you are in a certain location, heading in the right direction. When actually, where you need to be, is on the new road that the system didn't registered when it scanned the immediate environment looking for relevant information.

However, in that hospital room, 21 years ago, I didn't know about the fault in my mapping system and neither did anyone around me - not even my doctors. So, the world still looked exactly as it always had. I could see my family, my friends and the many doctors and nurses that buzzed around taking care of me. I could even see the view out of the hospital window, so along with everyone else, I assumed there was nothing wrong with my vision.

But I didn't feel the same. I felt anxious and on edge. I also didn't feel like I could trust my vision, especially when I was finally allowed out of bed and able to move around the hospital ward. But I was in hospital and not all that well, so who wouldn't feel like that? I also couldn't find the words to explain to the people around me how I was feeling or what I was experiencing and even if I had, I am pretty sure that no one would have understood what was really going on anyway.

So, I ignored the signs of an issue with my visual processing system, blamed all the difficulties on the stress of being in hospital and tried to use the hospital environment as a safety bubble that could protect me from the realities of an injured brain. This was a very effective strategy and as I got better, I started to enjoy my hospital holiday. I was recovering, it didn't look like there were any lasting side effects and I was surrounded by family and friends the whole time. It almost felt like a party.

But a safety bubbles is only good for a certain amount of time, at some point you really do need to face reality and acknowledge that things aren't quite as good as they seem. I had plenty of opportunities to do this in hospital - when I failed at some of the tests the neuropsychologist asked me to do, when I couldn't see the ducks out the window and when I couldn't see all my dinner on the hospital tray in front of me. But I continued to ignore these rather obvious signs, which of course meant that when it did hit home, I was completely unprepared.

It was the car ride home that finally got me and it was like I had been punched in the stomach. The excited chatter from my parents about taking me home, the constant noise from the car radio, the blurred images out the window as we sped down the road - first of city streets and then of open country side and the smell of the petrol at the petrol station all became so overwhelming, I felt physically sick. My heart raced, my head thumped and all I wanted to do was try and flee this nightmare situation as soon as I could. But of course, I couldn't and I had to endure the three-hour trip home.

When I arrived home, I was exhausted, I could barely see and I couldn't even walk up the two steps that took me into my family home. Something was not right.

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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At CVI Scotland we are devoted to helping people understand cerebral visual impairments, and together working towards developing the understanding of this complex condition.