After living with an impairment for over 20 years, one would assume that the person affected would be familiar with both the nature of their impairment and the resulting difficulties that it causes. Well that was certainly the case for me. At the age of 16, I had been diagnosed with a right homonymous hemianopia and provided with a detailed, scientific explanation of what that diagnosis meant. And although my battered and bruised brain didn't really understand it straight away, over time I thought I had managed to develop a pretty good grasp of this complex condition. For starters, I knew that it didn't just affect my right eye, it was the right vision in both eyes - hence why I couldn't drive. I also knew what area of the brain had been injured to cause this actually quite common impairment - my left occipital lobe. And because everyone (including the doctors, my family and I) assumed that my brain was now in perfect working condition once again (apart from the missing left occipital lobe), my vision wasn't going to get any worse. So I figured that I should have been able to get on with the rest of my life and accept that this half world was going to be the norm from then on.
As I went about my business, day in and day out, I fought hard to lessen the effects of the impairment and stop the many inevitable collisions and embarrassing incidents. However, although being able to spout off the convoluted medical definition of my impairment seemed to impress everyone I encountered, it didn't ever help me to remember that I actually couldn't see the right half of the world. It was such a frustrating and confusing issue. How come I could easily tell people that I had a right hemianopia, but I could never actually remember that when interacting with the world? At times this lack of awareness has caused the most frightening of incidents. Like the time, on a family holiday to Hawaii, I was convinced that cars coming towards us were driving themselves, as there didn't appear to be anyone sitting in the driver's seat. Of course, it was only upon loudly voicing my concern to confused (and somewhat amused) family members that I realised the drivers of these 'driverless' cars were actually sitting on the left hand side, which was to my right when travelling in opposite directions (in New Zealand, we drive on the left hand side of the road as opposed to the Americans who drive on the right hand side). For two whole days before finally voicing my terror to my seemingly unsupportive family, I had been utterly petrified every time I had hopped in a car. I knew that Hawaiians were known to be a laid back bunch, but not driving their cars seemed to take the laid backness to a whole new level!
You would have thought that incident would have taught me a lesson, but alas, it didn't. The next right side confusion happened soon after when I was travelling for work between the two islands of New Zealand. I had boarded a small plane in the South Island and flown a short distance to our capital city, Wellington. Feeling smug in my front seat position, I had been first to disembark from the plane and had sauntered across the tarmac to the terminal entrance. However, when I got there I couldn't get in. There was a glass door in front of me and although I could hear the noise of a door opening, nothing had actually moved in front of me. I started looking around for a button or something that would unlock the door, but couldn't find anything. It was only when my fellow passengers started streaming past me, curiously looking over their shoulders at me, that I realised the door had opened to my right and I hadn't thought to look for the opening on that side.
With these incidents (and many others) in mind, I started to grow anxious about my ability to cross roads safely when traveling to America to attend a conference. Firstly, I would have to remember to look the opposite way to what I do when crossing the roads in New Zealand. Secondly, I would have to remember to actually look far enough to my right to account for my hemianopia - something I seemed unable to do. Upon voicing my concerns, it was suggested that I start wearing my watch on my right hand to see if that reminded me to look to my right. Figuring I had nothing to lose, I gave it a try. But for the whole week I wore the watch on my right hand, I kept forgetting it was there. Even though I was the one that put it on each morning, when I went to check the time, I automatically looked to my left hand and when it wasn't there, figured that I must have forgotten to put it on.
Upon consulting an expert, I was informed that I may in fact have an additional impairment of hemi inattention that was compounding the hemianopia diagnosis. This additional impairment resulted in me, at times, forgetting that I even had a right side at all, which explained many of the 'accidents' or incidents I had experienced since the age of 16. So not only could I not see the right side of the world, I often forgot that the world even had a right side, especially when tired, anxious or overwhelmed. Surprisingly, once I could explain why I always knocked glasses over at the table, or why I left half the washing on the line, or why I sometimes only brushed half my hair, I started to feel less disabled and more normal. This was my normal and it made sense, it was just another piece of the brain injury puzzle.....but gee I wish someone had properly diagnosed my hemi inattention long before my panic attack in front of my family that a driverless car was about to run us off the road!
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.