Writing with epilepsy

I think any writer, whether they are just starting or even a published author, will agree that the process of writing can be a struggle. Being a writer with a disability even more so. It becomes not only about the inspiration and skill of writing, but also the ability and practicality of being able to write at any given time. It’s not something that everyone considers with their peers and their capabilities, and for those looking to start out it may seem like a barrier that they may think they feel uncomfortable to cross. So I think it’s important to share an insight into what being a writer with a disability can mean.

I was diagnosed with nocturnal epilepsy in 2008 and suffer from tonic-clonic, or grand mal, seizures. I also suffer from auras during the day that have started to occur this year. Seizures have fluctuated between every 1 and 6 months since the start and while each set of seizures have been excessive and result in permanent effects, I’ve only had to be hospitalised a handful of times. Perhaps that’s the first thing to note about having a long term condition. Calling for an ambulance a few times doesn’t seem out of place. It becomes a (thankfully infrequent) part of your life. This condition has had several detrimental effects on my writing which are now something I just have to work around.

The repeated seizures have caused brain damage, specifically to my memory and to my language. The language part has the biggest effect when writing, and also conversing with the community. It feels like losing a part of the dictionary with every seizure. Not being able to find the right word is annoying. But when you’ve forgotten all the words it can be demoralising. Thankfully with patient thought, Google, and a partner who helps with the details, I have been able to cope with my writing. There are always resources to help and rehabilitation can come from reading as well. It’s slower than I’d like, perhaps less elegant, but it does the job. On a lighter note, I’d like to think that my condition has given me quite a quirky writing style. It might not be correct in all aspects, but it does the job.

My memory, like my language skill, gets lost a little bit with each seizure. It’s hard to say how much has been lost, ironically because I don’t know what I knew in the first place. There are story ideas I know that have completely escaped me now. I find odd snippets in old cloud files and pen drives. Story titles, synopses, character biographies. The original plans for them are completely gone. There is an entire first draft of one of my current works in progress sat in my documents. I have no memory at all of writing it past the first 100 or so pages. I haven’t had the courage to read it. I’m not sure if I want to compare it to the plans I’ve made now.

With every seizure I have I worry that the same thing will happen again. There are plans to have whole series of novels in the future. From a professional point of view, writing a continuing story while losing memories of the start of it is a huge challenge. Mostly I worry about forgetting the characters I am growing so fond of. While I know there may have been great ideas lost completely, this has still given me the opportunity to improve the work I still have. What has been done from years ago can be looked upon with more experienced eyes and refined. Again, it will take more time and effort but it isn’t impossible.

If I might take a moment of vanity here, another worry I’ve always had with my memory is if my work becomes more public and my past comes back to haunt me. It’s not just stories I’ve forgotten. I’ve lost whole people. Whole relationships as well. There is a picture saved in my Google drive of a girl and the only thing I remember of her is a brief sexual affair. I don’t even remember her name. If, perchance, I do become quite well known I fret about being confronted about some past transgression. I know I have things to atone for. If I believed in heavenly judgement I’d think my epilepsy might be what I deserve. So if such a scenario does occur I hope, whoever you may be, you will believe me when I say I am sorry for what I’ve done, even if I can’t remember it.

So in the end there are a lot of hurdles with any disability to overcome. Time and energy involved in writing can be very minimal, especially if work outside of writing is involved. Another important aspect with any disability is self care. I work full time and also help care for my partner who is also disabled. To find time to write regularly can put unnecessary stress on my body, reduce sleep, or affect eating patterns. All of these can trigger seizures and it isn’t just that the effects are like I described. The last seizure needed two ambulances and the maximum dose of valium was not enough to stop the seizures. The next seizure could, in fact, kill me. A scary thought.

If I leave you with any thoughts it would be that it is not just a case of “You can do it. Work hard and you’ll succeed.” It can take time to adapt, longer than what you might consider normal and it will take preparation that isn’t usually thought about. While you might have at least a day a week to just write, someone might need to wait until the end of the month. It happens. If it happens to you as well, that’s OK. Your writing needs to fit around your capability, not the other way around. It is a disadvantage but it doesn’t make it impossible. Believe in your story and believe in yourself.

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