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Nicola McDowell’s Blog 15

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.

When a holiday is not really a holiday

There is a common perception in society, that when you are feeling completely overwhelmed by life in general and the complexities of simply just getting through each day are making you feel anxious, the best thing to do, is to take a holiday. The theory is, that by escaping the monotony and pressures of your daily existence, you are giving yourself a chance to relax and unwind your frayed nerves. By doing this, the hope is, that by the time you come back from your holiday, your batteries will be recharged and you will once again be able to handle anything that life decides to chuck at you.

While this is a good theory and probably true for most people, this is not necessarily the case for someone living with cerebral visual impairment. As it turns out, unfamiliarity is the perfect breeding ground for anxiety, stress and exhaustion, which can ultimately impact on overall visual functioning. Unfortunately, for my parents however, since they had no idea that I even had this complex beast of a visual condition, we had to learn this the hard way. How could they possibly know that a simple family holiday could actually make my life even more challenging?

The idea for a holiday had been proposed as a last-ditch attempt by my parents to try and improve my continually declining emotional state and overall mental well-being. For months, they had witnessed my on-going battles with the vision gremlins from the side-lines and had felt completely powerless and unable to help me. They therefore, hoped that a short holiday away with just the three of us, would help draw me out of my gloom and force me to spend more time out of my bedroom, which I had been retreating to more and more. Who doesn't a like a good holiday, right?

Who doesn't like a good holiday, right?

At first, I was extremely enthusiastic about the idea. The thought of being somewhere new and getting the opportunity to explore unfamiliar environments was exciting, especially since I was desperate to escape the tedium that had become everyday life. Unfortunately, however, this feeling of excited anticipation quickly turned to trepidation the moment I started packing my bags. Suddenly every aspect of the holiday became a seemingly insurmountable issue. How was I going to be able to find my way around this unfamiliar environment? How would I know which was our motel unit when they all looked the same? Would there be anywhere for me to escape to for down time within our motel unit? Would my bedroom be calm and relaxing and what would I do if it wasn't?

As each anxious thought rushed through my head, feelings of panic and dread begun to rise. I was being dragged away from everything familiar to me, from all the locations I had worked so hard to accurately map and now knew like the back of my hand. In this unfamiliar place, I would have no control over anything around me. But probably what scared me the most, was the fact that I was being ripped away from my safe place. The prospect of facing a period of time without my calming, clutter-free and peaceful space to retreat to, was almost as terrifying as having to enter Mount Doom on my own with no way of protecting myself. I was going to be exposed to the vision gremlins for the entire holiday, with nothing to shield me from their onslaught.

My parents were completely baffled by my sudden change of heart and as they had no understanding of what was causing these high levels of anxiety, they chose to continue on with the planned holiday. They believed, that by the time we reached our destination, I would have got over whatever was bothering me and would be able to completely relax and enjoy myself. Unfortunately, however, this was not to be the case. Although the motel was quiet and un-cluttered, it still wasn't familiar to me. It took me a long time to simply work out the layout of the small unit and where it was in relation to other landmarks in the area. I also had to work extremely hard to be able to move around the environment without walking into anything or hurting myself. This wasn't helped by the fact that often, I was still unaware that I even had a right side to my body or that there was a visual field to my right that I wasn't actually seeing.

The combination of the increased visual load and extra work required just to see, and also the fatigue of the pre-stressing and continued levels of high anxiety left me exhausted. I was desperate to withdraw to a safe place and was overjoyed when I realised that my bedroom in the motel unit actually provided me with the space I so desperately needed. It was quiet, calm and clutter-free. From that moment on, I attempted to spend as much time as possible, sitting quietly in my new safe place. This, of course, frustrated my parents, as the holiday was not having the desired effect they were hoping for and once again, they were continually having to entice me out of my bedroom.

So, although the holiday wasn't as successful as my parents had hoped, we did learn some important lessons along the way. To help reduce the anxiety beforehand, it would have been good to know that there would be somewhere quiet and un-cluttered for me to retreat to. We also learnt that safe places are transferrable, but still completely necessary wherever you are. And finally, we realised that although going away on holiday for someone with CVI may not have the desired effect of recharging your batteries, it is still possible and can be enjoyable if you have the right environments around you.

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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.