I had a severe stroke when I was running a half marathon
Against all odds, I’m hoping to restart my second year in September
Aged 19, I’d just started at Leeds University. I was spending too much time in the Edward Boyle for a fresher, but I more than made up for it on my nights out. I was healthy, hard working and athletic. I was just like you.
Then I had a stroke, and everything changed.
It was at the end of my first year, when I was racing for a personal best in the Leeds half marathon. I started feeling dizzy about 16km in but I pushed on. I started to feel queasy and struggled to find my step. What I didn’t know, was there was a fire roaring within my head that would prove to be catastrophic. As my fast-beating heart kept pumping blood to my brain to keep up with cardiovascular demands of my running, the pressure of the massive blood clot in my middle cerebral artery was rising and rising until the left side of my body gave up and I hit the tarmac with some force, as my left leg refused to respond to the signals my brain was trying to send.
A paramedic immediately recognised the symptoms of an ischemic stroke, and took me to A&E. I received thrombolysis – a thrombectomy whereby which a micro-catheter is inserted through an artery to remove the clot – while my family rushed up from my home in Somerset. It was touch and go for 24 hours, as CT scans revealed my brain was swelling dangerously to the point where the neuro surgeons performed a decompressive craniectomy. They basically removed a large section of my skull to prevent my brain being crushed. But I have no recollection of this.
For the five weeks I spent on the acute stroke unit, in what at the time was a brand new body to me, I was confused and very much in a state of shock. In that early stage of my recovery, I had no understanding the impact of a stroke would have on my personal, academic and physical life. While I kept my language skills, I could see everything on the left, but not necessarily notice things. I would constantly put my phone on a surface to the left of me and struggle to find it every time I needed it.
I would soon get used to missing out on things and would learn to become impervious to it – I had three holidays and four festivals booked for the next 12 months, all of which I spent on a brain injury unit unable to care for myself independently. For the entire time spent at the LGI, I was hemiplegic in its most severe form: I had absolutely zero movement or muscle activity in either my left-arm, hand or leg, as well as not having the strength to sit up in a wheelchair, which meant I was completely reliant on others to wash and use the toilet. I was washed in bed and had to use bed-pans and once catheter free, bottles in bed. Just being washed with a flannel in bed for days on end was something I hated. After about three weeks of bed washing, I convinced the therapy staff to assist me to have a shower. This took place in an extra-support shower chair with three therapists assisting me. In terms of wanting to use the toilet rather than a bed pan, I got to the desperate point of trying to persuade my brother to distract the nurses so I could hop on my functioning leg to the toilet. I was delusional to even contemplate this at that point – I wouldn’t have been able to get myself out of bed.
After a month I was transferred to a neurological assessment centre nearer my home. I spent six months there. When I arrived, I still had a complete hemiparesis – a lack of ability to sequence tasks in a logical way – and had very little core strength as well as a loss of sense of my midline. As I still had a large section of my skull missing, I had no choice but to wear a helmet to protect my vulnerable section of brain. I was not a fan of this, but understood the necessity when on my second month at Poole, I fell out of my wheelchair while reaching for a bottle. When you’re able-bodied and this happens, you get up. When you have only one functioning arm and leg, you end up stuck in a heap on the floor, completely unable to help yourself while simultaneously panicking because if the nurses find you’ve fallen, you lose the privilege of being in control of your own wheelchair seatbelt. Of course, I lost mine.
The therapy was fantastic at the unit and I would go home on the weekends, where I would sleep in one of the downstairs rooms where we had had a hospital bed and an electric hoist installed. I would travel sat in a wheelchair in one of these adapted vehicles that allow wheelchair loading, which meant being sat much higher up than other traffic with my helmet on. I soon became familiar with the blatant stares of other road users in traffic. As the weeks progressed in Poole, my spirit was kept up by tangible progress in physiotherapy, tiny flickers of tone in my left quads (the leg movement almost always returns prior to upper limb activity) and I also began to achieve a crude tightening of my left fist through a huge amount of effort, although no such finger activity. One of my most passionate hobbies was the guitar and as a classically trained grade eight guitarist, the inability to even move a finger was deeply frustrating. The best way to describe neuro-rehabilitation is there will be really good days, and really bad days.
I spent summer 2015 watching Glasto on the TV, trying not to think that I should have been there. Everyone returned to university, and I avoided Facebook so I didn’t get upset about what I was missing out on. When it became clear I wasn’t going back to start my second year, my housemates were forced to advertise my room. That was enough for me to decide I was going to put everything in to getting back to uni. If I were to give advice to a young person who’s recently experienced serious illness; you will most likely miss a lot of events and opportunities you wouldn’t have otherwise, and you should give yourself time to mourn the parts of you that may have been lost. The sooner you do that, the sooner you can focus on objective goals in the future to work towards – no matter how over-ambitious they may seem. At this point I was determined to get back to Leeds in September 2016, despite medical professionals warning me of the unlikelihood of this, given my current physical disabilities and cognitive impairments. Respectfully ignoring this advice, I bought ‘Design of Computers and other Complex Digital Devices’ by Sunggu Lee, and would sit in the middle of the unit reading and taking notes from this inch-deep text book. Although heavy-going, I was able to understand the content.
By around October 2015, after four months in Poole, I was able to stand in a standing frame and was starting to work on footsteps in a pulpit frame. I had some usable movement in my left arm and was keen to move to a the next stage of my rehab. By November, I had a titanium plate inserted into my skull to replace the section which had to be removed. My concentration improved drastically, and I was quickly back to absorbing as much knowledge as possible.
Walking with a high pole in physiotherapy sessions came quickly for me once in formal therapy in Surrey – an incredible experience after about eight months of being wheelchair dependent. The unit in Surrey was great for me; unlike in Poole I had other young people in similar situations and on similar journeys to me. I’ve now been here at QEF for five months, and I’m walking around using extensive leg-splinting and a walking stick which can prove arduous after longer periods of time. Now I am in the midst of organising my re-entry to university September 2016. Although I’m incredibly pleased to have made it this far, some medical professionals have said it’s still too early and I should consider a powered chair over aiming to walk longer distances, but I am yet to be deterred. Doctors have told that success in this will be a “remarkable achievement against the odds”.
I am apprehensive at the prospect of going back and struggling both physically and cognitively and recognise it’s a high-risk model, but for the sake of my mental, social and professional health, I have to at least try – even if that means living in adapted halls and using just one of my hands for everything. I will most likely only have fine motor skills in my right hand which poses problems for keeping up in Engineering lab sessions with delicate circuitry, so I have developed a few tools and methods to help me with that, such as a weighted ruler and a play-doh like putty to hold small items which need manipulating. In the future, I have plans to start a business designing and rapid-building bespoke personalised tools to help injured and disabled professionals succeed in their professional environment. To be honest, every morning of my life I am able to get up and wash without the assistance of a carer I will be truly thankful for.