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Aimee Malcolm

Personal Stories
 
 
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Aimee Malcolm

My name is Aimee Malcolm. I am 16 years old, in year 11 at Mansfield State High School. I have a brother named Kurtis, who is 19, and a twin sister Rebekah, who is my best friend in the world. We all play musical instruments (Kurt studies viola @ UQ; Rebekah plays double bass and bass guitar).

I absolutely love all kinds of music (both listening and playing), inline speed skating, roller derby, swimming, maths, science, art, drama and film. My favourite popular musicians are Megan Washington and Missy Higgins. I also love Celtic music - especially the Shetland and Cape Breton styles. My favourite Celtic musicians are Alasdair Fraser and Natalie Haas, Hanneke Cassel, and of course Emma Nixon (I play with her Brisbane Celtic Fiddle Club).

I play the violin (I am taught by Stephen Chin) and I am currently studying grade 7 AMEB repertoire. I sing, and I recently started playing the piano - I am studying grade 2 AMEB. I have also taught myself to play the guitar. I just love trying different musical instruments. One day I want to own a mandolin, a Celtic Harp and a Hardanger Fiddle.

I write my own songs in my spare time. When I leave school I want to study music at university and learn how to become a recording artist, or a music producer.

I also have an ABI - an Acquired Brain Injury.

I have a benign growth in my brain called a Cavernoma - also sometimes known as a 'Strawberry Birth Mark', except it looks more like a large raspberry , it is filled with blood, and it is in my mid-brain. It has a nasty habit of causing trouble. They can't operate to remove it - it is inaccessible.

On 4th June, 2009, at age 10, I had a large bleed in my brain - a haemorrhagic stroke. We still don't know why. It just happened. I was really lucky - I was already in hospital when it happened. Mum and dad knew something wasn't right, and took me there in the hours beforehand to find out why I wasn't 'quite right'.

On 30th August, 2012, at age 13, I had another stroke (it bled into itself) after being hit in the back of the neck with a tennis ball at school.

My brain is damaged in and around the brainstem and down into the cerebellum. My optic nerve has also been affected.


I have some weakness on my left side in my arm, leg, face, hand, and foot and core muscles. My speech and swallowing is affected. I have poor balance, co-ordination, and proprioception. I have a vestibular imbalance (coming from the brain, not the ear). I have a loss of, and different, sensations in different halves of my body - water can feel hot on one side and cold on the other.

Due to the optic nerve damage I have patches in my periphery where I can't see and I have poor convergence (I can't go 'cross eyed' so close up things are double). One pupil is bigger than the other, so in bright light and darkness I can't see well.

I have a moderate to severe hearing loss in both ears, coming from my brain (not my ears!) not being able to process the sound I hear - so I wear hearing aids, and I lip read rather well.

That being said - to look at me, and watch me in action, you wouldn't be able to pick any of this.

I have pretty dodgy memory. I can remember useless things when I don't need to, but as soon as I need to remember something important it just goes. My nana reckons I have 'old person syndrome'. My memories from childhood are mostly gone - I know the stories, but my own recollections are patchy at best.

Fatigue is by far my worst enemy. When I get tired, my brain stops working and my body stops doing as it is told. I have trouble walking and talking, I cough and choke when eating and drinking, and I get REALLY, REALLY cranky. I can go to sleep anywhere, any time. I have been known to fall asleep in class, in music rehearsals, in assembly at school, on the bus …. Anywhere!

When I had my first stroke in 2009, I was completely paralysed on my left side. I had to learn to do EVERYTHING again - walk, talk, swallow, dress myself, use a knife and fork, hold a pencil, write, use scissors - everything. The doctors said I would never play music again, especially not the violin.
I spent 12 months attending the Brain Injury Rehab unit at the Mater hospital. I had to have a splint on my left hand to stop it curling up, and had serial casting on both my legs. I still wear an AFO splint on my left leg, to help it to be in the right place when I walk.

Brain Injury is not just about recovering from the physical symptoms of having a stroke - it's a lifelong change that means that your brain works differently now. There are some things I can't do anymore, and some things I learned to do differently - basically 'whatever works for me is fine'. I am constantly trying to figure out ways to do things I can't do right now - like playing the piano and the guitar, and playing the violin. My teachers work very hard with me to find different ways to teach my brain to do the things I want to do. It takes a LOT of work to learn to do new things! This also makes me really tired. It is really worth it though.

At school, I have additional support, like extra revision, teacher aid support, additional time to sit exams (because I process information and write slowly), a special 'quiet room' to do exams (minimal distraction), extended deadlines and a flexible timetable. I do most of my work on a laptop because I find writing is very tiring. I also have help with the physical side of attending school, like providing storage for my books at school so I don't have to carry such a heavy bag, making sure my classes are accessible to me (stairs are a challenge), allowing me to move between classes outside of bell times so I don't get jostled and knocked over so much, etc.

I am currently studying senior (year 11 & 12) over 3 years instead of the usual 2 years, so that I can focus on getting the best marks I am capable of.

I participate in school sport activities in whatever way I can - I have tried my hand at swimming, running cross country, doing PE and fun runs - even though I am slow and awkward, they encourage me to try everything and do my best.

I am a member of the school Orchestra, Capriccio strings, Celtic strings and Advanced Celtic strings groups. I have elected not to be in a choir this year (I can only do so much!). I have also been a member of the Young Conservatorium string orchestras for the last 7 years (I am not participating this year). In the community, I play with the Brisbane Celtic Fiddle Club. I have participated in SHEP (Celtic), Creative Generations, and numerous other school and community opportunities.

I have some social challenges because I have a habit of saying the wrong thing (sometimes mildly inappropriate things). Sentences sound correct in my head, but they just come out wrong! I have trouble following conversations in a group, especially in noisy places. There can be a lot of information to process quickly, and I'm not good at that. It can be funny - If I'm thinking about something (usually singing a song in my head) and someone interrupts me, my thoughts (often the words of a song) have a bad habit of jumping right out of my mouth. Awkward!

Having a Brain Injury is hard - if someone has part of an arm or leg removed, it can be seen. You can't easily see that part of my brain no longer works. People often judge me negatively when I use the disabled facilities (I don't necessarily look 'disabled' all the time), or I stumble with my words, or I fall. That being said, I have some really awesome friends who are both young like me, and also adult friends. My friends don't judge - they accept me for who I am.

Music is my passion. I have worked really hard to be able to play my instruments again, and I fully believe that where there is a will, there is a way to make it happen. I want to show the community that just because you have a disability, doesn't mean that you can't be a musician.

My bucket list (things I wish to do in my life) includes learning to dance, learning to be a circus clown, travelling around the world, win an ARIA award, attend all the Folk Festivals (in Australia and overseas), see the snow, learn to ski/snowboard, and climb a mountain (any mountain will do!).

My name is Aimee - I can do anything I put my mind to - I am AWESOME!

 

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