My story started when I was 17. On summer break, getting ready to finish my A levels to then go off to university. A bit of a weird summer for me – started great with my first proper attendance at Glastonbury, this was the first of many – but that is a different kind of story (it was just down the road from me so a rite of passage for all of us). After that I had to have a back operation. All went well just to fix a curvy spine (scoliosis). So, from the start of a mad party summer to a chilled recuperating summer – 6 weeks rest.
Coming up to the end of recuperation – it was a weekend and really warm, so I had a delightful walk about one of my favourite stone circles in Somerset – a pretty good day. Came home, popped a film on – it was ‘As Good as It Gets.’
Then everything changed.
During the film I had some strange things occurring – just small things at first – uncontrollable dribbling (weird yeah) so I went to see my mum – tried to chat to her – couldn’t get any words out – just sounds! So strange. Mum looked at me, said my mouth had dropped to one side and said: “I think you’re having a stroke.”
I was thinking “oh this is my mum being the hypochondriac that she is” but she rang the ambulance anyway. They turned up – did checks, could not really find anything that was odd – except I wasn’t speaking - gave me a pencil to try and write something down – I couldn’t write anything – I could hold the pencil but couldn’t remember how to write anything or even USE a pencil. It was too much, and I just burst into tears. I couldn’t control that either – there was no control of anything…
Tests and scans would show I’d had an aneurysm. It was quite deep down in the brain and was caused by abnormal blood vessels. So, my mum was right – it was a stroke.
I spent a couple of months in a rehabilitation hospital, re-learning how to read, write, talk after a diagnosis of aphasia as well as all the other things we take for granted. The weird thing about talking was – if you asked me a question, I could visualise the answer, but I couldn’t get the words out! Fine motor skills had also gone, so I had problems with eating and using my hands. I remember trying to write thank you notes for “get-well” presents, trying to spell words and sound them out like I did in school, but it didn’t work anymore.
The word I as in “I want to say thank you”– how do you spell it? If you sound it out it’s like eyyyyy (sounds really long, doesn’t it?) but no it is just that one letter.
After lots of work with the speech and language therapist and helped by the fact that I did not shut up talking – if you know me, I am very chatty –my speech started coming back. Reading and writing took longer but I did return to college. I had a year out of proper education, but attended some classes with a scribe so I could catch up with friends, start learning again (I LOVE learning) and also to get some normality back in my life!
The first book I read after my rehab was Rik Mayall’s autobiography ‘Bigger than Hitler-Better than Christ’ – he is also someone that had a brain related illness which made it more relatable for me, and also, I am a big FAN!
I returned to college full-time the year after, with lots of support from the staff – extra time for exams, extra support needed. I worked my hardest at the same time as having some cool ass surgery to deal with the blood vessels. It’s called Gamma Knife surgery (using gamma rays). I am like the HULK or some other cool superhero (or if you are a King Gizzard and Lizard Wizard fan – there is a whole song that I can relate to!) I got the grades to get into university to study Archaeology in Bristol.
This is where I think all students and staff should listen up.
When I went to university, I did not embrace the stroke, I really tried to hide from it – everything was fine, I didn’t need extra help, strokes are an old person thang. I knew what I was doing. All I had to do, if I needed help, was ask. But I didn’t. I struggled for my first two years. My grades were not too bad, but I was slow at taking notes and keeping up – all my essays would have syntax problems and so were marked down, and there were a couple of times where hand ins were late, or I didn’t understand the assignment properly. I lost confidence with my public speaking as well; you cannot notice the stroke at all in my face now but in the back of my mind it was always like can someone see my mouth drop or is there a dribble out the corner of my mouth?
Between finishing my second year and going into 3rd year I thought I should do the thing and ask for help. I got an assessment – and yes, officially diagnosed with dyslexia and dyspraxia – and my university life changed. Back to extra time for exams, essays marked on content and not syntax – my grades all changed, my confidence returned, and I started to ask tutors when I was unsure. This really was a turning point for me – to always ask for help now and not suffer in silence – and to never let anything hold me back in what I wanted to do!
When I think about my time at university, I really want to say please reach out – there is so much help here. My journey from university to be here, working at the library (that is where you recognise my face) has been up and down, but my cheerful outlook and my willingness to learn and accept help has been pivotal along the way! I never let my neurospiciness stand in the way anymore. I still struggle with professional writing, but a meeting with our wonderful Atech team here at the University of Aberdeen helped me access some of the software for free that can help with this side of things.
At work and out of work I love to bring people together! My job at the university is on the Welcome Desk at the Sir Duncan Rice Library and I am always trying to get involved with different projects, especially those that bring people together. What I love about the university is that it’s a place I can get involved with all types of projects from outreach work to detailed copyright work. I feel like I have support and can ask as many questions as I like.
This passion for bringing people together is shared in my volunteering role. When I moved to Aberdeen 7 years ago, I needed to find some type of community and I joined GGI (Girl Gone International) a Facebook social impact community group. I started to meet people, made friends, and then wanted to help planning events. This led to me being an event host. I then moved up to become a community leader, leading groups, and training other volunteers; and doing behind the scenes admin tasks. What I love about GGI is it’s a safe place for people to meet and connect, not just in Aberdeen but worldwide. Last year I stepped up to become Global Support. This for me was quite scary as I was worried about my level of professional writing, but the team is a great support – with us being such a diverse rainbow of people – thrive, connect and support are at the core of the group! So, at the moment I am looking after all the UK groups and help supporting all groups worldwide – this is a girl who had forgotten how to speak, that was very conscious of her public presentation skills – now hosting online workshops, leading groups of over 2000 members to form communities and combat loneliness, traveling across countries to meet and connect – we had a massive summit meeting in Lithuania with 80 attendees for across the globe sharing ideas thoughts and strategies! I even got to host a trip away to Iceland last December – and yes, I got to see those Northen Lights!!! My next steps will be to start working on the data side of things, to allow my CPD within the group and push the boundaries again – me, out of my comfort zone.
I share my story all the time now because it is so important for people to know you are not alone. Everyone’s stroke journey is different, but it is important to remember this is not an old person thing, it affects everyone from all ages. The key for me was frustration – and I was so lucky to make the kind or recovery I did. This was due to the support of my friends, my family, and my POSITIVITY. Sometimes I think of what a different journey I might have taken without the stroke, but I guess it just would not have been as interesting – I do love a challenge!
Never forget what you love doing.
Always stop and ask for help wherever you are in work life or academia.
Never stop being you.
Embrace the different side of you.
My story is just one flavour in the big mix of neurospiciness – and one spice by itself can be powerful but a mixture of spices is always better. Keep sharing!
