As with most teenagers, a favourite pastime of mine was to raid the kitchen cupboards in search of yummy treats, hidden leftovers and favourite foods. Being at the ripe old age of 16, I had also grown very accustomed to the freedom and independence of being able to locate specific food items myself and then create delicious snacks with relative ease. A trip to the kitchen in the ad break of a favourite television programme was a fairly simple process and one that could be achieved in a very short space of time.
However, all that changed after the stroke to my visual brain and subsequent neurosurgery to stop the bleeding and save my life. I suddenly found that a forage through the fridge left me exhausted and stressed, without any real understanding why. I would stand there for an age, staring into what seemed like a black hole of a food dispensing unit, never finding what I was looking for. My gaze would dart from one item to the next, only ever seeing one at a time and never understanding where each item was in relation to other items. I had no systematic search technique, as I felt like I couldn't control my eyes. They had a mind of their own and would decide to look at whatever they wanted to and because of the abundance of food to look at, I seemed to have no control over their movements at all.
It was extremely frustrating, as I would see food go in, but was then unable to locate even the most basic of refrigerated items - like a bottle of milk. I started to accuse my mum of hiding things from me and whenever I experienced another failed attempt at locating that allusive plate of leftovers, I would get angry with anyone who was unfortunate enough to be nearby. Finding food had suddenly become an emotionally and physically draining exercise. So, in a time where as a society, we had become very used to just being gatherers of food, I suddenly had to revert to being a hunter and a gatherer again. The only problem was, I just didn't have the right tools on hand to be successful at this.
Locating objects in the walk-in pantry was even worse. There seemed to be no logical explanation for where everything was and of course, not being the mother of the house, I did not have any control over the placement of specific food items. In fact, it felt like there was no storage system at all. I am sure my mum just placed items wherever there was a space, or wherever she felt like on any given day (in all fairness to mum, maintaining a pantry system in a household of five must have been extremely difficult). I simply could not memorise where everything was and so each trip to the pantry meant I had to start afresh in mapping this small but very important environment.
From this, a desire for order and routine begun to develop. I wanted to make sure everything had a place and that everything was always in its place, as this way I would be able to find it easier. For this reason, my bedroom became my sanctuary, as this was the only place in the house that I could achieve the order I needed. I installed organisation systems in my wardrobe and drawers that even the army would be proud of, which took the stress out of finding what to wear each day. Walls were stripped to only a few strategically placed pictures and everything was put away the moment I had finished using it. It was every mother's dream, a teenage girl's bedroom that was always tidy and a teenager that didn't have to be constantly nagged to tidy up her room.
However, the desire for order, quickly turned into an obsession. The perfect environment that I had created in my bedroom, meant that I wanted to spend more and more time in there alone. I didn't like it when people came into my room, and I found it hard to have friends over to stay, as their 'things' in my room were out of my control and would mess up my space. Also, because of the peace and calm I felt in my room, I wanted to find other spaces where I could feel like this during the day. This of course, was an impossible task, because as a teenager, there was nowhere else in the world where I could have as much control as my bedroom.
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.
Your generous donations will be put to immediate use in supporting our charity...
At CVI Scotland we are devoted to helping people understand cerebral visual impairments, and together working towards developing the understanding of this complex condition.