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Beat The Beast Challenge

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Encouraged by my Oncology team to not waste anytime should we ever intend to marry and despite me continuing to have poor health, no wealth and no earning potential, in May 2017 Allie became my wife. Since then we 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 everyone of the more severe epileptic seizures also left its own scarring on the brain. So I have been left brain damaged and diagnosed with neurological dysfunction and SMART syndrome.

The brain controls our very existence, even those areas that we take for granted, such simple things such as walking, talking, breathing, or swallowing, so even though I can, at first glance appear to be perfectly normal and do have on occasions, really good days, I too frequently suffer from:

  1. Functional Limb Weakness in which I can become clumsy and lose much motor function down one entire side, which has on occasions led 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 and even struggle to pick up cutlery so can struggle to eat. I can struggle to keep a hold of things so drop things frequently and can, at times, become a complete liability to myself, when doing such simple things, such as chopping vegetables.
  2. I frequently suffer from Migraine and stroke like episodes that rob me of my ability to think, speak, see or walk anywhere safely on my own, leaving me stranded in a type of suspended animation with significant head pain.
  3. I almost permanently suffer from a tiredness that can, at times, drag me to my very knees exacerbated of course by my inability to take a full night’s sleep.
  4. I almost permanently suffer from 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 just 5 minutes ago.
  5. I almost permanently suffer from a concentration span that is so poor that I can struggle to hold a conversation or read a book. I get half through the conversation or down the page before finding my mind elsewhere and then I cannot, of course, remember a bloody thing that had just been said or read, so have no choice other than to shrug my shoulders, smile meekly, apologise and ask to start again, and again, and again, until eventually apologising again, and suggesting that we try again but on another day.
  6. I frequently suffer from an inability to recognise people I know really well with a mind that changes the very appearance of people, even my own wife. A mind that can see things that are just not there. A mind that can be so slow that it can convince itself that it is in a completely different space/time continuum, so I have a mind that cannot safely cross a busy road on its own. A mind that loses its thread repeatedly in conversation and can be so slow that it can struggle to keep up with a call centre operator on a telephone call or with a dynamic and fast-moving conversation. A mind that now struggles to understand the social norms of conversation, so can struggle to know when to shut up and listen, so can struggle to discuss, struggle to argue nicely, struggle to negotiate. A mind that becomes exhausted after just 30 minutes of conversation, or that becomes overwhelmed with blurred vision, wobbly legs, poor balance, slow and slurred speech when in a busy pub full of vibrant people, or an echoey room full of talking people.
  7. I frequently suffer from a terrible balance that can see me being propped up by my children just to get me to the car, or propped up by Allie like a drunkard, without a drop having passed my lips, my arm over her weary shoulders, as it is the only way to get me from point A to point B. My terrible balance has thrown me into roads, off step ladders, into door frames and lamp posts and seen me tripping over perfectly flat pavements.
  8. I frequently suffer from facial twitches with a mind that sees me subconsciously making the most extraordinary mouth movements and shapes. Mouth movements so severe that my jaw snapping during a neurological seizure snapped my jaw closed so hard that it cracked a tooth entirely in half, requiring emergency root canal surgery and an eventual tooth extraction. A mind that struggles to control my tongue, cheeks and lips so struggles to speak and struggles to chew without biting great chunks so very painfully out of my lips and cheeks, and struggles to chew without throwing great chunks of half chewed food, unexpectedly, down the back of my throat. So I have a mind that has left me feared to eat on my own for the risk of choking. I have to concentrate so very hard on every bite chew and swallow.
  9. I frequently suffer from a body and face that twitches and tremors as tiredness, once again, drifts unstoppably in. A tremor so subtle that at first you would struggle to notice it, yet so pronounced that it makes the writing of emails, messages and texts on smart phones, tablets and similar electronic devices and sometimes even with a pen, initially quite comical, and then very quickly, nearly impossible.
  10. I almost permanently suffer from a mind that constantly struggles to find words. So have a mind that struggles to speak clearly and struggles to be understood. A mind that can at times speak complete nonsense yet believe itself to be absolutely correct. A mind that, as a result, becomes frustrated and angry at the simplest of things.
  11. I can at times suffer from a mind that finds the simplest of tasks almost impossible. A mind that can forget how to tie a shoe lace. A mind that can struggle to undo a lace when tied with a double knot. A mind that can be defeated by a childproof pill bottle. A mind that has been seen turning a rucksack over and over and over on its knees on a bus subconsciously talking to itself while trying to decide where to pack away a cap before then getting off having left the cap on the bus. So I have a mind that would lose anything and everything if it wasn’t tied to me or my rucksack. A mind that has been found half naked, confused and disorientated, having lost himself and his locker on returning to the changing room from the swimming pool. A mind that can be found confused and disorientated with blurred vision, wobbly legs, poor balance and slow, slurred speech, hanging on to his shopping trolley as an anchor, having lost himself, and become completely overwhelmed in the complexity of the supermarket spice shelf. A mind that can no longer safely cross a road, no matter how small, without a green man.
  12. OOOHHH THE PAIN! I frequently suffer from random but intense pain in the chest, head and limbs. I have had every test known to man, for my heart health, so know that there is nothing wrong with my heart despite the pain. After many tests, we know that there is nothing wrong with my limbs or circulation, despite the pain. We know that my head is damaged, but the ice pick headaches that drive in unexpectedly with a sudden intensity that can come close to felling me to my very knees, can be particularly distracting. After a few ambulance journeys and many tests I no longer call for help. I know that it is Neurological Dysfunction, that the pain will pass, so just grin and bear it.
  13. I can at times suffer from a mind that will subconsciously talk to itself to the point at which those close by, whether on a bus, on a train, or in a supermarket, or even on a golf driving range simply move further away.
  14. I very rarely, I am pleased to be able to announce, but have on three occasions so far, suffered from a mind that struggles to control simple bodily functions like urination and defecation. I have to constantly know where the nearest loo is as I really do not want to have another accident.
  15. I can at times suffer from a mind that has seen my whole body dropped to the floor with poor cognitive and motor coordination on numerous stressful occasions.
  16. I almost permanently suffer from a mind that becomes exhausted with blurred vision, wobbly legs, poor balance and slow, slurred speech after just 45 minutes working at a computer. A mind that can no longer do two things at once, so becomes frustrated and angry when another email appears, or the telephone rings, or somebody else just wants his attention.
  17. I almost permanently suffer from a mind that will try and keep a place for everything with everything having its own place yet, at times, cannot find a damned thing without Allie’s help.
  18. I almost permanently suffer from a mind that will struggle to make a decision without a list. That will see me wandering backwards and forwards, in and out, standing and sitting, doing and not doing. To do or not to do? That, appears to be 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 can at times, quite frankly, be 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 not be able to do a bloody thing about it. A mind that the harder it tries to stop whatever is happening from happening, the worse that 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 that I am 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 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 and 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 simplest of 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. The day we married 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. I am blessed to have her.