For weeks I have been working on a new post that has grown longer and longer as wonderful stuff kept happening and happening that I had to tell you about but just couldn’t find enough time to write it, and as I struggle more and more under the burden of neurological dysfunction my ability to write succinctly has eroded further. What I wrote is great, but it is too long. Equally I really need to strengthen my relationship between myself and you. While I am brilliantly supported by my wife Allie, my children Heather and James, and my wonderful family, I need the moral support of as many voices as I can muster to help me keep going and to raise as much as I can for the Disasters Emergency Committee.
I need to know that my existence has so much more worth than just life itself. I need to hear the voices of support on the touch line. My Neurologist used two very small phrases when we last met that nearly went unnoticed. The first was ‘still fizzing’ and the second ‘do anything to stop you going demented’. At the time I smiled but now I know what he means. Much like a deep burn in the skin and muscle of the body, radiotherapy and chemotherapy focused on the brain keeps fizzing in the brain for some time and I am utterly convinced that it is still fizzing in my brain and, as a result, I am going backwards. I have terrible days and I have better days, but I no longer seem to have good days in which I just feel normal. I live with a permanent fizzing in my body, face, mouth, eyes and brain. Sometimes I can see clearly, sometimes I can’t. Sometimes I can think and speak clearly, but sometimes, and with increasing frequency, I can’t. Sometimes I can actually hit a golf ball and sometimes I can’t. I don’t mean that I am just playing badly, I mean I cannot physically coordinate the mind and body to hit a ball. Sometimes I can type well, yet with increasing frequency I swap around letters and syllables in words and words in a sentence as I type, which makes working with the written word a labour of love. Then if I concentrate for too long I lose the next couple of days to ‘Twobbles’. Twitches, wobbles and bobbles that come all at once in an overwhelming neurological dysfunction. Some days I can play the piano tune I am working on and some days I can’t, I have to relearn and re-teach the brain this phrase or that phrase with irritating frequency. Some days I can almost juggle, but some days I can’t. From moment to moment in each and every day, I am gently fizzing below the surface, close, so very close to a twobble when I find the coordination of my left arm and hand’s motor function struggling and my walking poorly coordinated and my entire bodily coordination in motion in a manner akin to cerebral palsy, while each and every word has to be formulated with a conscious shaping of my mouth and nodding of my head much like a child with learning disabilities to actually make the words I want to speak understandable, as if trying to speak with swollen tongue while actually trying to focus on the person or ball or note or word I am attempting to address. More and more I feel as if I am getting swept down the creek with a paddle full of holes. I am in unchartered waters and paddling hard against the current with a brain full of holes and as a result there are an increasing frequency of days in which I just cannot function, in which I can do nothing but smile and look this person who I know I should know and do know but do not know in the eyes, before saying ‘fine thank you’ even though I might well be feeling like shit, fizzing and bobbing inside like a mad man.
Apart from my amazing family, nobody really wants to know the truth. In this fast-paced world very few have the time for the truth and, more than likely, to try to tell the truth in person to each and every person who asks ‘how are you?’ will overwhelm me and throw me into a twobble. As I battle with my failing neurological health within a fast-paced world that appears to be increasingly disinterested, I grow a deeper understanding of what my neurologist meant when he said I will need to find ways to avoid becoming demented.
I am not going to curl up into a ball and wait for the switching off of the lights, as appealing as that course of action sometimes seems. I have no intention of succumbing to Dementia, nor of sitting back and living off the state, even though some, including a gentleman today, suggest that I have earned the right through my service so to do. But each and every day is a challenge right now and I so badly need your help, and the help of as many people as we can muster between us, to keep my head above water. From now on I am back to telling the whole truth regularly on this my Facebook page, as I use the vehicles of Acting, Golf, Music, Writing and Juggling to try to retrain and strengthen my brain, and ask as many as can to provide a short positive comment of encouragement and to take the time to fill in this standing order:
https://www.beatthebeastchallenge.co.uk/sponsor-archie
to sponsor me even if for just £1.00 a month. Every penny goes to the Disasters Emergency Committee and gives me a sense of worth, a purpose, and every comment, no matter how short, helps keep my chin above the water. I need you. Like the Thai football team trapped in the cave, they needed the divers and the support and prayers of the whole world to be saved before the monsoon rains overwhelmed them. I am trapped in the cave of my porous brain and while the medical team are informing me that there is no way out, I have an air pocket of hope, but I need your help to keep working hard to find a way out. Each and every single day is a genuine challenge so please help with positive comments and sponsorship and ask all your family and friends to do the same too.
I am still searching for the breeze and the shaft of light of a possible way out of this cave and in so doing find some moments of light and positivity and hope and will of course let you know about them in the hope that such moments might provide light for you too.
Thank you.
Yours aye
Archie
Deo Juvante
I will Beat This Beast!