If you have ever been the parent of a teenage girl, what would you do if your normally spirited, people loving, quasi adrenaline junkie daughter, suddenly insisted on spending as much time as possible, shut away by herself in her bedroom? My guess is that you would see this as a sign that something was not quite right in her world and insist on the most obvious solution - to force her to come out of her bedroom and gently encourage her to spend more time doing things with people.
And that's exactly what my parents did. They recognised that my constant retreat to my bedroom was for a reason. But unfortunately, due to the fact that no one, including myself was aware that I had CVI, they did not understand the real cause of my withdrawal. Instead, they saw this sudden desire of wanting to shut myself away from everyone and everything, as a possible sign of depression and nothing to do with my vision at all. Feeling completely lost and unable to help fix my battered and bruised brain by themselves, they also did what most parents would do in this situation. They consulted their local family doctor, who agreed with their suspicions that I was potentially depressed. Of course, he wanted to confirm this diagnosis by conducting a thorough assessment of me, but being in a state of extreme stubbornness and completely terrified of the person I had become, I refused to see the doctor.
His advice to my parents therefore, was to slowly draw me out of my bedroom by encouraging me to spend more time with my family and friends and to participate in activities that I used to enjoy. Although I was all for this and wanted nothing more than to go back to living my old life, the reality of this process, started a particularly harrowing two years of my life. The reason for this, is that what my parents and the doctor didn't understand, was that my bedroom had become my safe place. A place where I wasn't terrorised by my visual issues, because I was in complete control of the environment. I had made sure that it was as uncluttered as possible and I knew where everything was. It also never changed. So, in actual fact, I wasn't hiding myself away from the world at all. Without really understanding why, I had simply created an environment for myself where I was able to relax and recharge my visual brain and overall energy levels without fighting against the constant clutter, noise, and unpredictability of the outside world.
Thankfully, my parents recognised that they couldn't just force me out of my room and ban me from going back in there, except to sleep, so a somewhat happy medium was agreed to. I was allowed to spend as much time in my bedroom as I wanted and needed, as long as I agreed to see my friends and regularly attend different social gatherings. Discussions with my parents before going out, then became what every parent must dream of. Instead of battling with their teenage daughter about how late her curfew was going to be, they had to negotiate with me about how long I should try and stay out for. And even though I always tried to last at least a couple of hours away from the house, my parents got used to the panicked SOS calls early in the evening to come and rescue me.
But once I was home and sufficiently recovered after a certain amount of time in my 'safe place', I would start to berate myself for being such a useless teenager. Surely, as a young adult, I should be living life to the fullest and constantly challenging the boundaries imposed upon me? Wasn't I meant to occasionally scare my parents by missing a curfew? Not scare myself by spending time with friends. These experiences took their toll on me and I finally hit rock bottom the night of the school dance in my last year at high school. As a senior, the dance was always a big social event and I had been looking forward to it for a long time. The dress had been purchased months in advance on a special mother and daughter shopping trip and a full day of preparation activities had been planned with friends leading up to the big night.
Unfortunately, the buzz of activity before I had even got to the dance had already completely exhausted me, so by the time I arrived at the venue, the noise, flashing lights, loud music, constant movement of others and visual overload was just too much. I had a complete CVI meltdown and ended up cowering in the toilets, trying desperately to hide away from the chaos. Another SOS call home and half an hour later, I was tucked up in my bed, soaking up the calmness of my safe place. However, at the same time, I was also sobbing uncontrollably because I was missing all the fun. I had lasted 30mins at the dance.
I think this experience helped my parents and I to understand that having a safe place wasn't just a selfish or indulgent desire, it was a necessity. If I was going to be able to continue facing the world every day, I needed a safe place - not to retreat to and hide, but a place to recharge and prepare myself for the complex visual world I live in.
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.
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