One of the most important lessons I learnt in relation to my visual difficulties and CVI, was knowing when to ask for help. And I am quite ashamed to admit this, but it actually took me over 20 years to realise this! For many years after I acquired CVI as a teenager (and especially before I even knew I had CVI, which wasn't until 17 years later), it was hard enough for me to admit that I was having issues, let alone ask for help in relation to these difficulties. I have always been a fairly stubborn and determined type, so when I first acquired CVI and started having challenges with many aspects of my daily life, I just figured that I could sort out a solution by myself without asking for help from anyone. Unfortunately, this approach also fed into my fiercely independence streak and resulted in many unnecessary and some even life threatening situations.
Like the time I almost got hit by a truck crossing the road, because, even though I didn't actually feel safe crossing by myself, I was too embarrassed to ask for help. Or the time that I almost drowned trying to complete the swimming leg of a team 'off-road' triathlon in a picturesque New Zealand lake. Although I had obviously trained in the lake beforehand, I hadn't anticipated the impact so many athletes in the water with me at the same time would have on my vision. Of course, as my anxiety levels rose and the panic set in, my vision reduced and I was barely able to see anything. But instead of sticking my hand up and asking for help, I swam as fast as I could (sometimes in the wrong direction) to get out of the water as quickly as possible. End result was that I almost passed out at the end of the race - but on the plus side, I was one of the first females out of the water and set my teammates up well for the rest of the race!
Probably the most detrimental to my schooling, was all the times I couldn't actually see what was written on the board, or couldn't copy the information down fast enough before it was replaced with new information, or couldn't read the small print on the handouts I was given, but didn't actually let the teacher know this. Realistically, I was probably only ever getting about two thirds of the information my classmates were getting, something that considerably impacted on my achievement levels.
So how did I learn to ask for help? And more importantly, how did I know when to ask for help? Well it actually came down to understanding my visual difficulties better. Actually knowing what caused them and knowing what was needed to lessen the impact of the visual issues. It was only when I was finally diagnosed with CVI and in a sense, learnt to 'wear my CVI suit' better, that I gave myself permission to ask for help. And to my utter surprise, it was actually quite liberating for me! It was almost as if admitting that I occasionally needed help with certain things, helped me to come to terms with it more.
What was also surprising is that sometimes asking for help is actually done by way of explaining my visual difficulties, rather than asking for help per-se. A good example of this is when going out to dinner with a group of friends and needing to sit in a certain spot for optimal viewing and enjoyment of the night. Now I simply explain that I need to sit in that specific spot so that I can see everyone better and not be impacted by visual overload. Unsurprisingly, I have never had anyone have an issue with this.
But I think the most important thing for people to understand when it comes to asking for help, especially for children with CVI, is that the child and their parents firstly need to be empowered through information to help them understand the condition better. You can't ask for help for yourself or your child if you don't know what is needed, because you don't know what is actually causing the issues. It was only once I had been empowered through a deep understanding of my own condition that I was able to ask for help from the people around me. And that in itself was even more empowering. It seems quite obvious that we need to make sure that our children are living in a world where asking for help is seen is ok and actually preferable to almost drowning.
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.