Disability, Living with Cerebral Palsy

“Sorry for making you jump!” – Living with a startle reflex and Cerebral Palsy

It’s that time of year again. The nights are drawing in, the weather is getting colder and the sounds of ‘pop’, ‘bang’, ‘fizz’ fill the air as Fireworks are let off everywhere around the country.

Fireworks can be a bit of a nightmare for people like me who have Cerebral Palsy. Ever since I was little, sudden and unexpected noises have caused me to leap what feels like 3ft into the air. My whole body contracts and tenses up in that split second it has taken for the unexpected sound to travel to my ears. For people witnessing this unusual behaviour, if they don’t know me they would probably assume that the noise has frightened me and I would be upset. However, in the majority of cases the opposite is true. I may have seen that something was going to make a loud noise and knew exactly how my body would react to it. It’s very much a natural and regular occurrence for me. Even so, it has only been in the last decade or so that I have come to learn that this “jumpiness” is in actual fact a part of my condition` and something which I am only recently coming to terms with and accepting.

These sudden, jerky movements as a reaction to unexpected noises is what’s known as a startle reflex (or Moro reflex to give it its scientific term). It is something which is often seen in infants, as a response to a sudden loss of support, but for many it disappears when the baby reaches 3-6 months of age. However, for people with CP, this is something which never really goes away and it becomes even more noticeable as we get older.

Growing up, I was really aware of the fact that loud or unexpected noises made me react in a way that everyone else I knew did not. At primary school I used to get incredibly nervous every time the bell rang to signal the end of lessons, or when I was expecting the teacher to raise their voice and shout in assembly. There were a few occasions when I had jumped in the past when people, both children and adults, couldn’t stifle their laughter at seeing my bottom rise off my chair in shock – my arms & legs punching the air as if defending themselves from an invisible attack. My body’s unwitting display was mortifying. I don’t recall anyone explaining to me at that time why I reacted in the way I did. Those who knew me probably laughed and brushed it off as a regular occurrence but something that would quickly be forgotten about as it only lasted a few seconds. Those who didn’t know me very well, especially if they thought they were the ones to trigger my exaggerated reaction, would come over all apologetic and make a big song and dance over it – either publicly promising to try and never make me jump again (e.g. my GCSE French teacher after suddenly shouting at someone else misbehaving in class), or to overtly forewarn me every time they were about to do something that had previously triggered my startle (e.g. my Technology teacher in secondary school every time they were about to hit something with a hammer). In actuality, both reactions would have actually increased my chance of startling as the more anxious and expectant I am of something making me jump, the more likely it is to happen.

I know now that when I am anxious or nervous about something, my body’s natural reaction is to tense up all my muscles as part of its instinctive ‘freeze, flight or fight’ response (unfortunately it hasn’t compensated for the fact that as a result of my condition, my body’s flight response isn’t that reliable!). Therefore when that expectant noise occurs, my muscles are like a taut spring. The tension increases the distance and duration to which my body reacts. My obvious movements are even more exaggerated which as a result makes them a lot more noticeable.

As a child however, I never knew that all of this was linked to my disability and that I couldn’t help the way my body reacted. I often thought it was to do with my shy nature and that people were right to laugh and think it was strange because it wasn’t “normal”. I wish someone had explained my disability to me at that age in a more thorough way instead of just the standard “your muscles are tight and don’t move in the right way, so you need to do lots of physio and exercise to help them”.

This lack of information and understanding of our own condition is a common occurrence for those living with Cerebral Palsy. For most of us, our parents are given the diagnosis in the first weeks and months of our lives and we were given a certain amount of support to keep us as physically active and mobile – to get us as close to “normal” as possible (whether that be through physiotherapy, operations to loosen our muscles and straighten our legs to help us to walk better, or equipment like walking aids and AFOs/Splints). However, in my experience I was never really told explicitly that Cerebral Palsy is in essence a brain injury and that although in my case its primary effects were seen in my muscle tightness and leg movements, there were other less noticeable impacts it had on my life too – such as the startle reflex.

It wasn’t until adulthood when I applied for my first drive from Wheelchair Adapted Vehicle and one of the assessors told me that this “jumpiness” had a name and was a common symptom in people with Cerebral Palsy, that I actually began to find out more about my disability, become more accepting of it and started to see that it was actually okay to set boundaries in situations that would have triggered these involuntary movements. If I was in a building that was due to have a fire alarm test and I was aware of the procedures to go through in the event of a fire, then its okay to ask to leave the room to be somewhere quieter so the loud noise doesn’t cause your legs to spasm and your anxiety to get overwhelming. If I “jumped” at a sudden noise and someone else in the room proceeded to either laugh at me or be overly concerned about me, then its okay to assertively tell them that I’m alright, its something I can’t help and “please don’t draw attention to me!”.

I don’t want to come out and say for definite that if I had this knowledge and understanding of my disability at a young age then it would have made me less ashamed and self conscious of it. On the contrary in some ways I think it might have actually made me despise my disability more! But if those around me – parents, family, teachers, medical professionals – could have been more aware of it – known not to be concerned about it or draw attention to it and perhaps given me the confidence to know that it was nothing to worry about, people would be wrong to laugh at it and that I could get some space in situations that were causing me that much stress, discomfort and anxiety – then maybe I would have had accepted my disability and had more self esteem and confidence than I do now.

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