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Nicola McDowell’s Blog 22

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.

Finding ways to cope

As a teenager, being unwittingly thrust into the foreign world of the medical professionals was both overwhelming and frightening. In that first stage of the hospital period, I was obviously unaware of the mental turmoil this was causing my parents. But as I progressed to the stage of being an outpatient, the burden started to shift to me. Like all parents in this situation, they fought to shield me from the emotional roller-coaster of the endless prodding and poking of the medical professionals. But as it was me under the microscope, it was impossible to stop the entire physical and emotional burden of these interactions quickly shifting to me. Frightened that I would not be able to continue to endure this strain, mum and I did what every creative person would do to keep themselves sane in this situation - we started to make jokes about the different professionals I saw and if we could, came up with a nickname based on our interactions or their personality or characteristics.

As one can imagine, these names differed greatly depending on how positive our interactions had been. For example, the neurosurgeon who had conducted the delicate 8 hour surgery on my injured brain, became known as 'the teddy bear', as he reminded us of a great big cuddly teddy bear. The good looking registrar that visited me every morning was given the privilege of being known by his first name. This was mainly due to his friendly and sincere interactions with us - the good looks were just a bonus for a bored teenage girl! The emergency doctor that had been part of the rescue helicopter team was also given the privilege of being known by his first name, this time solely based on his sparkling blue eyes and charming smile. In contrast, the neuro-psychologist became known as Miss Trunchbull from the Roald Dahl book Matilda, as a result of her very efficient manner and tall and overbearing stature. But there were also some professionals that I chose not to give names to, as I tried very hard to forget my encounters with them. This was the case for the hospital ophthalmologist I saw only once. During our interaction, he didn't actually seem to want to know me at all. Admittedly, making eye contact with someone who is looking at the floor is quite difficult, but he didn't go out of his way to try and reassure me at all.

Once we left the hospital, I think mum thought the game was over, but for me, the fun was only just beginning. With my routine visits to the outpatient clinics and occasional visits from rehabilitation specialists the possibilities and opportunities were endless. The occupational therapist who visited me at home and conducted assessments on me that I didn't understand and didn't see the point of (like making a cup of tea, when I didn't drink tea), was rewarded with a dose of petulant teenage passive aggressiveness. This time it was me that was trying not to engage with the professional. I didn't talk to her, I didn't answer her questions and I only reluctantly did what she asked after being reprimanded by my parents. But in my defence, I didn't know what she was there for, I didn't know what she did and I didn't understand why I needed her help.

However, the person I dreaded seeing the most was the outpatient ophthalmologist, who absolutely terrified me. Just the thought of having to see him the next day would leave me feeling nauseous and unable to sleep. Following the appointments, I did everything I could to forget I'd set foot in the hospital, so he didn't actually get a nickname and in fact, I couldn't even remember his actual name. The cold and clinical waiting room almost brought me to tears every time and his gruff and curt nature made me too scared to ask him to explain what was actually going on with my vision. As a result, for a long time I believed I was going to lose my left field of vision, as well as my right, which would effectively leave me blind. By the time I got to completing the field vision test, I was generally so anxious and stressed, I would hardly ever see any of the stupid red lights in any part of my visual fields, which just confirmed to me that my vision was getting worse. After the field test, the disappointment in my performance was clearly written on his face, although he never said it to us in so many words. I figured he assumed that I was faking it and therefore, didn't really need an explanation of what was going on with my vision. Just another needy teenage girl, trying to get even more attention.

As a result of these mostly negative interactions, I developed a fear and sometimes hatred for all things medical. And unfortunately, this is something that has stayed with me for the rest of my life as I have encountered other medical professionals for different health reasons. And as such, the game has also continued, but now it is my husband and I that invent the names and make the jokes. I have found it helps to keep the emotions at bay.

Fortunately however, it only took one medical professional to completely change my perspective and show me how rewarding a positive relationship with a doctor can be. And the main difference I hear you ask? It was very simple. I was listened to. I was asked to explain my visual difficulties. I was believed. I was given time and most importantly, I was empowered. As a result, my life has been completely changed.

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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At CVI Scotland we are devoted to helping people understand cerebral visual impairments, and together working towards developing the understanding of this complex condition.