The past few months have been a great interruption in uni. Really great. I’ve loved lying around, unable to do anything due to the extreme fatigue that comes with having a brain injury, being completely overwhelmed and watching my brain shut down by seemingly innocuous stimuli such as rush hour on the tube and just feeling quite frustrated at not being able to complete my degree. But as September rolled into October, I started to feel stronger, less tired, less foggy and more determined to get myself back to my old life. With a few modifications for Ralph, of course, but as close to my old life as possible.
The first step was work. I had held a part time job as an events first aider for the past three years which made going back to work gradually very easy, as I sort of chose how much per month I wanted to work. My first shift back was exhilarating. My mind was constantly split between “am I truly ready to jump back into life and work” and “Oh my word, I’m so happy to finally get on track again!” My shift partner was my usual partner in crime, which helped massively with the first thought. Since then I have been working increasingly more, whilst feeling proud of myself for I had had a huge haemorrhagic stroke 8 months ago and nobody could tell! It felt great to gain some independence back and, importantly, get paid and have some form of income. My financial state up until now had been dire, as apparently when you get ill and take a year out there’s not much help you can get financially. I was ineligible for Student Finance loans as I had already received it for four years. I was ineligible for NHS bursary as I wasn’t in clinics. And as an “external interrupted student” I was both a student and not a student and thus ineligible for help from my university. I had many long meetings with student advisors, the conclusion of which was essentially “Sorry. Can’t help you. Move back with your parents.” But I couldn’t move back with my parents; they didn’t live in London which meant any time I had a hospital appointment it would cost me about £40 in travel. Not only that, but the closest neurosurgical hospital to them was a good 2 hour drive away – so if Ralph decided to rupture again, my chances would be very slim compared to the 20 minute journey I would have to my hospital now. After having several doors shut in my face and being told “Sorry, we can’t help you”, it felt amazing to be able to start to support and help myself at least financially.
Anyway, I digress. Work was going well, so that was one aspect of my old life I was clawing back. The other, however – the student part – was a lot more difficult. When I had my stroke in March, everybody agreed I would be in no state to take my exams in May, so they were postponed till August. When I had my surgery in June, everybody agreed I would be in no state to take my exams in August, so they were postponed till the following May – leaving me with having to take a year’s break from my studies. I had already decided I would study slowly and thoroughly from September onwards for these May exams, but I was met with several mental and cognitive barricades. I had already attended all of my lectures, done all of my coursework – all I had left were my exams. And I had very good notes from the previous year. But every time I looked at the page, even though I saw the physical scrawl of my notes across the page, I had absolutely no memory whatsoever of writing it. Or being there. Or knowing the information. It’s impossible to describe the frustration of having information in front of you that you once knew so well, joked about with peers so often, made geeky references to on a daily basis…. and now instead have a black void in your memory where it once was. I tried to change this by revising every day, but suddenly studying had become laborious and inefficient. I mean, studying was never going to be easy, especially when it was neuroscience, but trying to study after having a brain haemorrhage was near impossible. Mentally, it felt like trying to swim through concrete. Imagine your life; starting at primary school and trying to figure out abstract learning methods based on the simplistic tasks you were given. Then you get to high school and the level is so much higher and harder, so you adapt. Then you get to 6th form and you do the same. Then you get to university and you do it one more time and by the end of your degree (or at least, halfway through mine seeing as mine isn’t a 3 year degree), you get to a point where you feel you have refined and streamlined your learning methods and style. But then something happens and mentally you go back to your primary school level of learning, whilst dealing with university level knowledge. That’s how revising felt. I couldn’t concentrate for longer than 10 minutes, I couldn’t focus, I was constantly getting distracted and it took me about a week just to go through one, one hour, lecture.
Obviously this was not conducive to my studies. I tried different tactics, the one that seemed to work the best being having 10 minutes “on” and 5 minutes “off” – allowing myself to have that 5 minute break seemed to stop me from procrastinating throughout. Whilst I’m sure most students can relate to the demon that is procrastination, this was on a whole other level. When my nurse called me a few weeks ago I filled her in on everything that had happened (including my apparent seizures, which will be covered in another post) and she spent some time assuring me that I shouldn’t try and rush back into studying; it was natural to be experiencing this. Nonetheless, she referred me to the neuropsychology department for an assessment. I got the call the next day to arrange an appointment, which was on the 20th of November.
Yet again, I approached this hospital appointment with a mixture of excitement and wonder. I had briefly studied neuropsychology in my 2nd year; even written an essay about it. I met up with a good friend for a catch up, who actually worked as a neuropsychologist, and we discussed my various issues and the upcoming appointment with interest. For those who haven’t googled it or figured it out yet;
Neuropsychology: the study of the relationship between behaviour, emotion, and cognition on the one hand, and brain function on the other.
Basically, it was the study of how my cognitive processes – my thinking, perception, recognition, processing, memory, attention, focus and all other sorts of stuff – have been affected by what happened to my poor brain. I already suspected I had some mild form of prosopagnosia (inability to recognise faces) and dysphasia (impairment of language processing… like always having something on the tip of your tongue). But I had no idea what was going on with my memory.
I arrived ready for my 9am appointment, a bit apprehensive that the early (for me) start would cloud my test scores somehow. After giving a brief history to the neuropsychologist the tests commenced. There were tests involving words, tests involving pictures, tests involving faces, tests involving numbers, tests involving shapes… there were a lot of tests. It will take too long to list them all, but I was incredibly mentally fatigued at the end… which led to physical fatigue. I got the opportunity to rest as often as I wanted, which allowed me to analyse the purpose of each test. Things that I remember struggling with were:
- Visual recognition; I was shown a set of about 15 photographs, one per page, and told to remember them. Then I was shown 3 similar photographs per page and had to point to the one I had been shown previously.
- Facial recognition: On the same theme as above, I was shown about 15 faces, one per page. Then shown two similar faces per page and had to point out which one I had seen. I don’t think I got any of these right!
- Object recognition/naming (?): Different items, animals, objects etc. were shown to me and I simply had to say what it was. What shocked me was for about 40% of the items, I knew exactly what it was – I could describe in a lot of detail what they were/what they were used for, but I just simply couldn’t name it. This is known as “anomia” I believe!
These were just things that I had noticed. But apparently the neuropsychologist wasn’t too bothered by this, as at the end she told me that my main issue was actually my attention. My actual memory was functioning fine, it was just that I couldn’t pay attention to things to commit them to memory – so they were never there for me to remember in the first place. I will be going back on the 8th of December to work through these issues – I’ll try and remember as much as I can, as I’m pretty sure I know a lot of students that could use these techniques too! 😉
I suppose in a way I’ve been very lucky and unlucky. Seeing as my stroke was so specifically localised to my temporal lobe, it didn’t affect my physical capabilities (mostly controlled in the parietal lobe) apart from the occasional fatigue. But it has certainly affected my cognitive processes. It’s such a hidden deficit that on the outside, I appear to be perfectly normal and healthy, just like how I was before. I was warned that going back to studying would be hard, but trying to claw back my mind from what it used to be is one of the hardest things I’ve had to deal with. I don’t even know if this is going to be my new normal or if I’ll be able to improve it. Hopefully with the help of the neuropsych team it will be the latter, but only time will tell!