I used to be active, able and always driving myself to be better. I was involved with local communities and charities, always trying to be more when it came to my personal and professional passion for health and social care.
In hindsight, I was distracted and driving myself towards an edge. Up until about a month ago, I had a home, the love of my life, a new career and … well, things were settling in – or so I thought.
The type of encephalitis that I developed was one born of stress. It manifested itself as shingles, and instead of just causing a rash and impacting me physically, it raced up my spine and took my brain by force.
Not just the temporal lobe, but also the lining of the brain too. No one can say why other than stress, and there is no single trigger point that can be identified at present.
All that can be said is that my brain, my mind and who I once was had reached their breaking point.
Had it not been for a series of lumbar punctures which led to discovery of the virus/infection in my brain, I wouldn’t be here to tell this story.
As far as I was concerned at the time, I simply believed I was developing either a cold or flu with a series of short headaches that felt like a wire being fiercely tugged from one side of my head to another.
Had it not been for my persistent mother and partner, I would never have called the NHS. An act that was simply to appease them (which I would have otherwise ignored) wound up saving the remains of who I am and potentially my life.
But it cannot be denied that there has indeed been a death.
Who I was, for the majority of my life, is not who I now am today.
Some days, I wake up not knowing who I am or where I’ve been. A house that I have known since 2006 has become a foreign land.
I can aim to go for a walk for half an hour at 8pm and return home at 1.30am without understanding that I am far beyond late.
Some days a minute can seem like an hour and I cannot function or even talk the way I used to.
Everything has to be simplified and I have to ask for explanations for common terms and phrases.
I struggle with short-term memory and experience emotional changes that I do not recall nor understand.
One thing that I do never forget is my partner. I may forget conversations or actions but not her; even old friends or common faces can become strangers but I wake reaching for her, forgetting that she’s away or at work. The same for my parents, I wander the house in search of them or repeatedly check for their car, forgetting that they’re either at work or out.
These three people I cannot forget – even though I can get lost in the most simple and lifelong routines.
I feel guilty as they have watched me go through this and no longer fully recognise the man they know and love.
I became diminished, reduced … altered in some way.
It is difficult to understand my actions or the changes I have experienced regardless of the doctor’s advice and handful of leaflets or websites that they’ve scoured in search of either advice or an answer to how long, how and why?
But I finally found something (or rather had it forced upon me) to slow me down, open my eyes again, remove the clutter that once blinded me, and allow me to feel again and understand what is truly important.
They say the devil is in the detail but, if so, then surely so is beauty?
As it is, all I can do now is slowly and steadily take everything one step at a time, day by day, brushstroke by brushstroke.
But there is far more to it, there is also a fear of the associated vulnerability.
I now have to ask for help or put my faith in those around me to tell me what I am doing, to help me get up from falling, and to guide me as I re-learn both myself and the world around me.
I used to fix and support others – and burn out in the process – but now I am the one in need and I can’t hide it.
And so, I am running on faith.
What also leaves a bitter taste is the misunderstandings of those who assume this is just a virus like the flu or that the confusion is similar to a migraine.
Yes, it was a virus, but has become an acquired brain injury.
There is no expected finish date.
There is no passing – like a cold, migraine or a bout of indigestion.
There is no bandage, plaster or visible scar.
There is no wheelchair or physical crutch for me – others can’t see the additional or original damage, and so assumptions are made or ignorance is demonstrated.
Friends evaporate as they do for many with neurological or psychological difficulties (they touch base by text), but also friends from over 10 years ago turn up, actually turn up, without having to be asked.
People who actually care turn up and ask how you are or ask to understand without judgements or predispositions.
A community builds around you, no matter the size of it, but it is one of truth, understanding and love.
My partner always says actions speak louder than words – and though no words were uttered to ask for help, these people show up, research, even touch base with family members to see if anything is needed, and offer to support my family and other half emotionally if required.
Whereas some of the old crowd either fade away or run, or, even though they are aware, excuse themselves, delay turning up or ignore the difficulty, or only text or phone regardless of time or effort spent in the past.
But those who try to understand, who are actually there… They show you your worth, remind you of who you are rather than how you’re perceived to be, and that although life’s events may have shaped you, those events do not make the person who resides behind the eyes.
And as both my family and I mourn the lost man and stolen life that has now faded, together and with the support of others, we are making a new world that is slower, more open, honest and the one we want and need.
Bad days will come and go, and with time things will get easier but it will never be the same. But I am thankful to those who are with me on the way.
Jim’s YouTube channel
