Why epilepsy means I can't read to my son for more than five minutes
Chris Sharp talks about how his epilepsy is triggered by reading and how he cannot share a book with his young son for longer than five minutes.
"He who learns must suffer. And even in our sleep, pain that cannot forget falls drop by drop upon the heart, and in our own despair, against our will, comes wisdom to us by the awful grace of God." Aeschylus
For some crazy reason, that quote always spoke to me in the context of my experiences with epilepsy. Luckily, although very rare, the type of epilepsy I have has a stimulus which I can control my exposure to, unlike many others who sadly suffer from the fear and unpredictability of seizures.
I have primary reading epilepsy. It is a very rare form of reflex epilepsy. However, it is my strong belief that it is underdiagnosed due to a lack of awareness. This is an issue I wish to fix, which is why I have chosen to speak out and share my own experiences. If it even helps just one person, then consider me a happy man.
So, let me take you to the start of my epilepsy journey, the early 00s. It was summer, Blink 182 and Limp Bizkit were the biggest bands on earth and Scrubs was everyone’s favourite show. I was 15 years old and reading The Catcher in the Rye on my bed. I remember reading page 147, it read ‘anyway I gave old Jane a buzz again, but her phone didn’t answer, so I had to hang up’ – then as I read the next sentence, it started.
My jaw started jerking, I can only describe it as an involuntary stutter or hiccup. I chose to ignore the warning signs and carried on reading as the jerking escalated in severity. I brushed it off as something I was imagining.
Then suddenly it was too late. It was a huge jaw jerk. I found myself being unable to breathe and felt a terrifying panic. Despite being unable to breathe, I could still move my body and desperately tried grasping for the bedroom door to alert my family. But it was too late. I fell to the floor, during that moment I accepted I was dying; I could not breathe and was ready to take my final breath before losing consciousness.
The next thing I remember was waking up on my bed. I felt confused. How could I fall to the floor and wake up on my bed – how did I get there? It did not make any sense. I asked my parents if they had entered my room. They had not. I did not understand, so brushed it off as a crazy dream.
Studying for a degree in English
The next three years were tough. I struggled to read out of fear of what might happen. Even though I brushed off the event as a dream, there was still that little voice in my head saying, “what if?”
Despite my struggles, I got into university and very probably foolishly chose to study English Literature – stories and books were my life before my first seizure, I couldn’t let it go.
The university gave me a reading list before my first semester. I decided to be brave and give reading a try again. Thankfully, it went well, and I managed to read three whole books during the summer!
Fast forward to a few weeks later after the start of my first semester. It was a cold autumn Saturday evening. I was reading Jane Eyre on my bed. I developed the jaw jerks again. By this time, I had become convinced the first event was a dream, this was all in my head and perhaps psychological?
Again, the jaw jerks grew in intensity. I did not stop reading though. As the intensity grew, so did my resolve to finish the book. I felt like I could prove it was all in my head.
Then everything changed. Yet again came a sudden violent jerk. Like the first time, I couldn’t breathe but could move. And again, I tried to reach my bedroom door to alert someone. I remember opening the door before losing consciousness.
Speaking 19th century English
This time I woke up to paramedics. I remember my mum crying. Even my stoic dad looked shaken. They asked me a bunch of questions, such as what I did the previous day. Shockingly, I could not remember anything, even what I had for breakfast. Strangely, when conversing with the ambulance crew I spoke in the diction of the 19th Century, probably because I was reading Jane Eyre before the seizure.
The ambulance crew suggested I go to my doctor and seek advice. Unfortunately, I didn’t take their advice out of fear I would have to quit university or had some inoperable brain tumour.
Throughout university I struggled. I couldn’t even read a chapter without developing jaw jerks. I chose not to read another book during my studies. Instead, I read important passages and remembered what I needed.
The symptoms were not exclusive to reading either. I developed jaw jerks and tightness in my mouth from all linguistic activities, including writing, listening, speaking, and even thinking!
I remember one occasion; I was working to a tight deadline for an assignment in the library before the jaw jerks started. Instead of having a seizure in public, I simply walked out of the library, which meant achieving a lower grade.
Another time, I was in the cinema watching Atonement. I felt hugely uncomfortable, my mouth grew tight and my brain felt like an overheating computer. I simply could not process the language and chose to walk out of the cinema.
After university I found I couldn’t function in a job which involved intense linguistic activities. This made me sad as it was my dream to work in PR. Instead, I worked at Sainsbury’s. I loved working there and my colleagues were like family. But it wasn’t the dream I had envisaged.
I had no idea what my condition was. I had done so much research but had drawn a blank. And I was still too afraid to see a doctor.
I did manage to get a part time PR job. But it felt impossible to work. When I got home from working, I would be unable to speak or think.
Diagnosis of primary reading epilepsy
In my mid-twenties I did eventually identify primary reading epilepsy as the cause of my symptoms. I spoke to some amazing neurologists from the Royal Berkshire Hospital, who referred me to the John Radcliffe Hospital in Oxford for tests. The doctors made the diagnosis of Primary Reading Epilepsy by conducting an EEG test whilst I read.
Since being diagnosed I have turned my life around. I take 2000mg of levetiracetam each day which largely controls symptoms. I now work in PR, my dream career. I am married to a beautiful woman and have the sweetest son anyone could ever ask for.
Although my symptoms are largely controlled, there remains a threshold. I can only read for so long. And I am unable to read stories to my son for longer than five minutes, as reading aloud is especially potent at triggering symptoms.
Sometimes, I do have spells when I cannot think and process language. Also, my memory has suffered from everything that has happened. Sometimes I find it very difficult to recollect very basic words which can be embarrassing. But luckily, I am surrounded by the most amazing people.
If you are reading this and have similar symptoms to me, then please ask for help by seeing your doctor. You can turn your life around!
I pray that everyone with this condition can experience the same success story as me. Sometimes there is a silver lining to these things. Going back to the quote at the start of this piece, despite the many struggles I have had, good has come from it.
Wisdom from my experiences has made me a resilient individual who thinks differently from most others. I have learned to embrace the fact that I am different. People with disabilities are special. And with unique weaknesses comes unique strengths.