August 31st 2023. 882 days after the first seizure event.
Reality check on my little science project.
Well, the decision has been taken.
Context: I voluntarily surrendered my driving licence at the onset of my seizures in April 2021.
Update as at August 2023: The short version of the decision is this: I do not feel that it is safe for me to drive.
I cannot even begin to, or even want to think about the possible consequences to innocent others, should I have any of my types of seizure whilst driving a car. I completely agree with my neurologist’s recent declaration that I remain medically unfit to drive. This is for a further 12-month period. I said to myself and others very openly that, I would only be able to begin to contemplate reapplying for my driving licence after 365 days of no seizure activity.
I have many different types of seizures. They range from full body violent seizures to the more subtle and sophisticated ones such as absences and drop attacks where in the latter I lose consciousness in a blink of an eye.
l am currently at 216 days along that timeline or rather I was.
I had two back-to-back physical seizures on 6th August which resets this clock to zero.
On one level, hugely disappointing for me yes. It means a continued limitation to my independence and the continuing reliance and support of my hugely caring wife and best friend Miranda.
I would be lost without her.
Miranda and all of my family have been amazing from the moment of onset, especially Miranda who made the call for the first ambulance in April 2021.
Paramedics declared me as status epilepticus and pumped me full of all available diazepam to stabilise me. For that I am grateful.
It is a sobering thought when you look at the morbidity rate of patients who are declared SE and the potential consequences if not treated rather quickly. I got off lightly so not being able to drive a car, well I’d swop that anyday for the complications which did not arise.
At another level, it is the only sincere and morally appropriate decision one can make given that seizures have a profound effect over your control and awareness. These words control, awareness, along with loss off and car, don’t play well together in a sentence.
Seizures are involuntary.
Driving is not a right.
You are only licenced if you meet certain criteria.
Way above that though is the morality of is it safe for me and for others – for me to be driving a big lump of metal travelling at speed. The answer is no and therefore this decision is the only option available to any reasonable person.
I am aware that some people may take the view that it is perfectly acceptable to drive with seizures and all I can do is to ask them to consider the evidence, their probability and to be rational and truthful to themselves and others when making their own decisions.
There is always the bus, shanks pony or an Uber. For balance, other modes of transport are available.
So here is an appropriate song which sums up why seizures should be taken quite seriously, written by Joy Division and sung by Ian Curtis, an epileptic himself. I saw this performed live back in the day and was mesmerised by Ian. The lady he sings about, another epileptic as they say, did not make it. Thankfully medical interventions are much more advanced nowadays.
There is though a much more positive conclusion to this little update which is that I have made remarkable progress in the past two years. Yes, it has been life changing and I have learnt a lot. The song below is one that I listened to constantly in hospital between seizures whilst plotting my escape from the clutches of the medical staff who were determined to push me around in a wheelchair lest I have a seizure and hurt myself. Not for me.
Thanks for reading and listening to the two ends of the spectrum.
You can see the full data on the Seizure Analysis page. This has data up to and including 31st August 2023.
Thank you for reading my story. I find my functional seizures fascinating and for me they continue to be a great science project for me to get my teeth into. As ever I remain very positive.
To experience is to live, and that is our purpose, whilst we await for our telomeres to finally unravel, and we depart this oasis which sits in the vastness of the universe.