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Beat The Beast Challenge

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Although it looks increasingly likely that I have beaten the brain tumour for good and that the epilepsy has subsided a little, I have discovered what damage to the brain actually means. The tumour has left an enormous great hole in the brain, the treatment has, as expected, left a significant amount of scarring in the brain and was still fizzing, killing and damaging an awful lot of healthy cells for some time even after treatment stopped, and each and every epileptic seizure also left its own scarring on the brain. I have been left brain damaged and have developed the neurological dysfunctions that go with it.

The brain controls our very existence, even those areas that we take for granted, like breathing, or swallowing, so there are times in which I suffer from:

  1. Functional Limb Weakness in which I can become clumsy and lose much motor function down one entire side leading a few times to collapses and drop attacks and on one occasion so far, a hospital admission with a suspected stroke. I can struggle to manipulate cutlery in my hands so can struggle to eat. I can struggle to keep a hold of things so drop things frequently and can, at times, become a liability to myself while trying to chop vegetables.
  2. Migraine and stroke like episodes that leave me stranded in a type of suspended animation with significant head pain.
  3. A tiredness that can drag me to my very knees exacerbated by an inability to get a full night’s sleep.
  4. A short term memory that sees me asking my wife the same question time and time and time again, that means that I cannot remember the name of the person that I met 5 minutes ago.
  5. A concentration span that is so poor that I cannot read a book. I get half way down a page and my mind is elsewhere and then I cannot remember what I had just read so have to start again and again until eventually giving up.
  6. An inability to recognise people I know really well. A mind that changes the very appearance of people, even my own wife. A mind that sees things that are just not there. A mind that is so slow that it convinces itself that it is in a completely different time/space continuum. A mind that cannot cross a busy road safely on its own. A mind that loses its thread repeatedly in conversation. A mind that struggles to understand the social norms anymore, that cannot discuss, that cannot argue nicely, that cannot negotiate. A mind that becomes exhausted after just 30 minutes of conversation or that becomes overwhelmed when in a room full of talking people.
  7. Dizziness that can throw me into roads, off step ladders, into door frames and lamp posts and have me tripping over flat pavements.
  8. A mind that can sink very deeply into the deep dark river of despair.
  9. Facial twitches with a mind that often sees me unconsciously making the most extraordinary mouth movements and shapes. A mind that struggles to control my tongue and cheeks and lips so struggles to chew without throwing half-chewed food, unexpectedly, down the back of the throat. A mind that has left me feared to eat on my own in case of choking. I have to concentrate so very hard on every bite chew and swallow.
  10. A body and face that suffers from twitches and tremors as tiredness once again drifts unstoppably in. A tremor so subtle that you would struggle to notice it but so pronounced that it makes writing a text or an email on a smart phone initially comical and then quickly, nearly iiiiiimmmmmmpossibleeeeeeeeeee.
  11. A mind that constantly struggles to find words. A mind that struggles to speak clearly and that can at times speak complete nonsense yet believe that it is absolutely correct. A mind that becomes increasingly and uncontrollably frustrated and angry at the simplest of things.
  12. A mind that finds the simplest of tasks almost impossible. A mind that often forgets how to tie a shoe lace. A mind that often struggles to undo a shoe lace when tied with a double knot. A mind that can struggle to open a childproof pill bottle. A mind that can be seen turning a rucksack over and over and over on its knees on a bus while talking to itself while trying to decide where to pack away a cap, then getting off the bus and leaving the cap on the bus. A mind that would lose anything if it wasn’t tied to him or his rucksack. A mind that can lose his locker and become completely disorientated on returning to the changing room from the shower. A mind that can no longer cross a road safely without a green man.
  13. A mind that will unconsciously talk to itself to the point at which those close by, whether on a bus, or a train, or in a supermarket, or even on a golf driving range move further away.
  14. A mind that struggles to control simple bodily functions like urination and defecation so has to constantly know where the nearest loo is as I really do not want to have to start wearing a nappy.
  15. A mind that has seen my whole body dropped to the floor with poor cognitive and motor coordination on numerous stressful occasions.
  16. A mind that is exhausted after just 30 minutes working at a computer. This summary itself has taken me the best part of a week to write. A mind that just cannot do two things at once.
  17. A mind that will try and keep a place for everything with everything having a place yet, at times, cannot find a damned thing without Allie’s help.
  18. A mind that will struggle to make a decision without a list. That will find me wandering backwards and forwards, in and out, standing and sitting, doing and not doing. To do or not to do? That, is the unanswerable question with the inevitable cop out, ‘what would you like to do Allie? No Allie, it is entirely up to you.’
  19. A mind that is frankly like that of a 5 year old. Stripped bare and having to relearn the very basics of life.

A mind that more often than not can know that it is struggling but cannot do a bloody thing about it. A mind that the harder it tries to stop whatever is happening from happening, the worse that neurological dysfunction seems to become. A mind that can know that it is struggling but not be able to communicate it properly to those he is with. And even worse, a mind that can think that it is functioning fine but struggle to understand that it is not when people seem to want to move away or get away or when Allie tries to gently warn it, to bring it back to a functional state, to bring me back home.

A mind that while the hope is that, over time, it will settle down and heal itself, leaves me in fear of dementia for there is no certainty as to when these neurological functions will stop developing or worsening. For while I have met lots of people who knew someone with a brain tumour the story has almost always been sadly, but inevitably terminal. So I feel as if I am once again in uncharted waters.

It is really hard for Allie because even though I might be there physically, I am often somewhere else entirely and when I am there but struggling but cannot communicate it properly, or thinking I am well but Allie is seeing and hearing that I am not, or when my mind changes Allie’s face to such a degree that she becomes unrecognisable, or when I try to communicate but cannot, or when I become frustrated and angry at the simple things, or when I see horrid things in supermarket aisles, or when I want to cross the road but Allie has to hold me back to stop me walking into traffic, or when I look like I might drop into a seizure or drop attack at any moment, or when she wants to help me untie my lace or tie my lace or open that bottle or tell me that word or show me that my organ music is upside down, or tell me who that was or what that was, or when that was, but instead holds back to let me fight with my brain to find a way to make it work, while answering the same question over and over and over and over again, and when Allie finds herself spending every waking moment worrying about me I discover just how amazingly strong, resourceful and courageous she is. When I married her I told all those who were there that Allie was my third leg that kept me stable, my sea anchor that kept me set on a steady course, my rock that keeps me strong, the heroine that rescued me from the deep dark river of despair and rescues me almost daily. But we had little idea of what was to follow. Yet she has stood by me with unerring love, dedication and determination to see me safe and well again despite the unrelenting urge that I imagine must be there to turn and run.

These neurological functional disorders are not on the surface all the time but they are a constant threat and can come with little to no warning, so they have to be beaten if I am truly to have life, if the children and Allie are to be able to enjoy life with me without fear of what might happen next. The brain is malleable so I will just have to find a way to train it. To knock any hint of a decline into a cognitive and motor function vegetable into touch, and smash any further decline towards a form of dementia right out of the park.

So while I am desperate to work, to be a part of something again, I have a mind that is just not fit for the normal stresses of daily life let alone work.

So I am developing a plan to try and retrain the brain using golf, sponsored by Dalmahoy Golf and Country Club, learning to play the pipe organ sponsored by the organist of St Pauls and St Georges Church in Edinburgh, learning to juggle, and to retrain my brain in social interaction, memory recall, mental discipline and concentration et al through the medium of drama.