30th June 2022. 445 days after the first seizure event.
Good afternoon.
Let me begin with some numbers.
623 total seizures over 445 days and a current probability rate (PR) which has reduced from 6.88 per day on day one to now be 0.06 per day.
This PR is the ‘likelyhood’ of me having a seizure or sequence of seizures in any one given day.
Last physical seizure 122 days ago.
Last absence seizure 21 days ago and a total of 7 absence seizures in the past 61 days – the frequency is reducing.
And the first publicly available pictures from the James Webb telescope are due on 12th July – that will be far more interesting than my musings below.
Before some musings here is a picture.
Let me offer some thoughts on this simple graphic.
Last month I wrote.
‘Consider the development of a child in the way it learns to walk. Learn, plateau, learn some more, plateau, learn and then exponentially they are off, never to be sat still again. This strongly supports the view that the pathways leading to a seizure have been ‘unlearnt’ and replaced with far more beneficial pathways. Let us be measured though and see what a further 30 days shows us before we move from a supporting view to a concluding view.’
This month I can say, with a high degree of probabilistic confidence (that in itself is a concept), that the data I have upon myself shows that the ‘process of seizures’ – their manifestation and occurrence – is an ‘unlearnable’ possibility. To make something innately involuntary, voluntarily controllable. That is not to say cure. It would be foolish as to make such a claim. It is to say though, that you can reduce involuntary seizure activity to be an absolute minimum through the power of harnessing your own neuroplasticity.
Some hold the equally valid view that one can learn to live with seizure activity and to learn how to co-exist with them. My view is more positive than that, when I say that it is demonstrably possible to live once again, without seizure activity and for the period of seizure activity to just become another memory, another chapter in that rich experience we have upon this oasis, which we call life.
As with all of such statements it depends upon your view on life, your mindset and the how you go about approaching the very nature of life which is full of ambiguity, doubt and uncertainty. There is no need to be afraid of the unknown – it is a space to be explored, to be understood and holds the joys of discovery and experience.
For me, seizures, aka The Insidious Little Bastard, were never going to define me. They were and remain a fascinating science project.
A purposefully brief update as I have written enough on the subject so I will just add one more picture if I may.
If one considers that everyone has moments each day where they are zoned out, lost in the moment, is the probability of such events being 0.06 nothing more than that which we each experience every day. Maybe some of us just experience those moments more intensely than others. That is how I view my absences now.
This month also saw me reach another milestone or two in my life – free prescriptions and a free bus pass.
So, with bus pass and holder around my neck, I can quite confidently travel knowing that should I have an absence and miss my stop – I have free travel home from wherever I may end up. The possibilities are endless.
There is always an upside.
You can see the full data on the Seizure Analysis page. This has data up to and including 30th June 2022.
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.