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.
After living with numerous unexplained difficulties for a long time, finding out that I had an impairment that explains all of these difficulties, was like winning the lottery. On the one hand my world was opened up to a lot of precious information that I hadn't previously had access to. But on the other hand, all of this information was so overwhelming, I didn't actually know what to do with it. So, for the first six months after being diagnosed with CVI, I put the information in a box in the corner of my mind and waited for the right time to start unpacking the box.
Living with undiagnosed CVI for such a long time, was quite soul destroying. I didn't know why I had so much trouble going to the supermarket, or why going to a crowded restaurant was so hard, or why when tired and stressed it felt like I couldn't see anything at all. So of course, when I finally got this diagnosis that answered all my questions, the first thing I wanted to do was to 'fix or cure' myself. But as I found out, this is not possible with CVI. Just because I know that I have CVI, it doesn't mean that it is magically going to fix itself, just because I want it to. It's is a slow process and it is important to take baby steps and to remember that I cannot expect miracles and improvements in visual skills to happen overnight.
I found this out the hard way. I thought that because I knew why different environments were so challenging for me at times, I could make them be more manageable, just because I was aware of the issues. But of course, that's not the case at all. I am still affected by the same visual difficulties and at times, I am still powerless to do anything to stop the impact of these difficulties. So, I still have lots of bad experiences and CVI meltdowns and in a way, they are almost worse, because I get so frustrated with myself that I let them happen when I should have known better.
So, for all newly affected people just coming to terms with CVI, whether it's yourself, your child, other family member or friend, it is important to remember that every adaptation I have made to my daily routine in terms of my vision and every strategy I have tried, have all taken time. Time to see if they will help (many haven't) and time to make them easily accessible to me and manageable when I need them the most. And I can only try one thing at a time, when I tried to do everything at the same time, it fell over.
A good example of this is in relation to one of the main challenges associated with CVI - cluttered environments. Once I found out why I struggled so much in these kinds of environments, I tried to avoid them all as much as possible. But in life, it is never quite that simple and I would often find myself right back at square one, surrounded by people, noise, clutter and chaos, fighting back the urge to flee the environment as fast as I could and trying very hard not to scream or sit down and cry. Simply knowing why I was feeling anxious and panicked, doesn't made it any easier to deal with.
So, this is why I am still on a CVI journey four years after getting the diagnosis and I imagine I will be on this journey for the rest of my life. Of course, it has its up and downs, as with everything. But the successes and the days of winning the fight against the visual difficulties are becoming more and more common.
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