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Beat The Beast Challenge

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Over the last few weeks I have been living on the edge of a neurological seizure. The shared understanding that, over time, I might have beaten my epilepsy in beating my brain tumour and through my balanced daily lifestyle coupled with brain training, has led to a reduction in the high impact anti-epileptic seizure medication with a blended introduction of increasing levels of a much gentler anti-neurological seizure medication. The intent is, over time, to improve my quality of life but the, what I hope to be short term, reality is that I have found myself living on the edge and fighting hard to maintain my sanity and the will to win. It has been a wonderful Easter spent with my children and nephew and godson, and even my youngest brother on his stag day, but all the time I found myself fighting. Fighting to preserve my dignity and fighting to preserve my sanity by not allowing these neurological dysfunctions to rule my daily life and prevent me from being anything other than an oxygen thief. Nearly every day I find myself working hard to stop myself from either repeatedly sucking my lips into my teeth and making extraordinary mouth movements and groans and sounds, or choking on food I am having to concentrate so hard on swallowing, while reminding myself to breathe as fierce pains hold my perfectly healthy and many times checked heart tight in my chest, while concentrating so hard to formulate words and not stutter or stammer or sound like a young man with brain damage, while concentrating so hard to stop my head nodding up and down in a perpetual nod, or my head ticking in sharp movements left or right, or my nose twitching like a rabbit or my right hand flicking up and down repeatedly in such a way that it is impossible to hide, or not pulling my left hand into my chest in a bent backwards way like a person with cerebral palsy, while concentrating so hard at not walking into things or falling off kerbs or walking into the path of moving vehicles, while concentrating hard on not collapsing when my legs start to jerk and wobble preceded by a rush in which all around me comes so very close or all around me goes so terribly far away. Close, far, close, far, quickly and repeatedly like something is playing games with me, on concentrating hard at not knocking things over or dropping things when my depth perception goes or I lose my motor function co-ordination, while concentrating so hard at not getting unbelievably angry at the sound of rustling plastic or people hovering behind me when I can't hear them, or concentrating so hard on trying so hard to appear normal , or concentrating so hard on not collapsing into a blubbing heap in a steep decline towards the bottom of the deep dark river of despair. I now know what my neurologist meant when he said that I had to do all I could with positive and brain training activities to stop myself from becoming demented. A lot of the time I appear to succeed and cannot help but emit a wry smile when friends not seen for a while comment on how well I look and it is clear that they were expecting a gelatinous mass in a strait jacket or a wheel chair rather than someone who is confident that one day I will be completely normal. I know that it is going to take many years but despite my brilliant neurologist's dire warning that I will never regain the cognitive function that I once had, that I will never have the cognitive capacity for meaningful employment, I have a faith, a deep faith, that through the mediums of golf, drama, music and writing, and my balanced daily lifestyle, reinforced with lots of green tea, and maybe even a little juggling, I can fight back and, step by baby step start to claw back those bits of my cognitive self that I am missing. With God's help I can do this.
A few weekends ago I was given huge encouragement by friends and family at my youngest brother Harry's stag day. I knew that I couldn't do the night but thought that I could watch the rugby match with them, then share a 1/2 pint of Guinness with Harry to wish him well on the wonderful journey of marriage. After all, 'love and marriage do go together like a horse and carriage' and on this weekend of Harry's stag I was given much encouragement.

Tim, Deirdre, Marvel and Griffin from the USA
Tim, Deirdre, Marvel and Griffin from the USA

On the day before, as I travelled to Waverley station, I overheard an American couple on the bus wanting to get to Waverley, I initially tried to give them instructions but I just couldn't find the words to make the instructions make sense so instead offered to take them. I could see that they were reticent at first to accept the help of this gibbering fool, but in the end they put their faith in me and accepted. As we walked to the station I learned that they were over for the World Irish Dancing Championships in which young Griffin had been placed an incredible 20th in the world. Inspired by Griffin’s success I gave Tim, Deirdre, Marvel and Griffin from Chicago a brief introduction to the Challenge and how I thoroughly enjoyed all that I had achieved when working with American forces during my military service but how I was finding this new challenge so very difficult with so much uncertainty. I have found over the course of the Challenge that telling the truth is the best way and in revealing all of my inner battles to this wonderful family I found that I had secured a new friendship. Tim presented me with a challenge coin as we parted and has already liked my Facebook page and is I hope, doing all he can to find me sponsorship from within his team.

Once in London, Allie guided me across the city from Kings Cross to Twickenham to help me find the gang at the Rendezvous. I asked her to come and say hello but Amazing Allie did not want to embarrass me by taking me in like a child being dropped off at the crèche, so instead kissed me goodbye and trusted that I would be fine and, somehow make it back. At the match at the Stoop between Harlequins and London Irish, I had a wonderful chat with an older friend in which I was able to offer hope and encouragement and leave him with knowledge of my balanced daily lifestyle. I got to spend a little time with each of my other brothers and reassure them that all will be fine for me one day, although I was able to predict that Harry might suffer a little the next day. After the match, before I had even finished my half pint of Harlequin bitter the mass of people around me rushed in. They hadn't moved but all of a sudden felt much closer. I knew that it was time to go, handed my remaining beer to a friend then said good bye. Harry had been plied with goodness knows what before I appeared for the match so I am not quite sure who was holding who up when we gave a farewell hug but I knew I had to go and on shaky legs, probably looking quite drunk, led by Google maps made my way to Twickenham station. Despite a most excellent mobile phone app, I had to ask rugby match street guides 3 times how to get to Twickenham station. I could not make head nor tail of the app nor the directions given in good humour, until I realised on the third time of asking for directions that I had been stood outside the station for quite some time. I nearly stepped onto the wrong train but had the foresight to ask a passenger with slurring words who smiled and pointed to the bridge to take me over the line and on to the correct platform. Allie met me at the station and guided me across London to stay with friends of ours: Natasha, Pete and their children Jacob, Zac and Allie's god daughter, Maddy. We had a wonderful evening as we all caught up with each other while I managed, with some success to keep control of my body and mask my frustration at my brain's failings. We all retired at a sensible hour for bed but I was up early so took myself out for a walk; a good brisk 20 minutes which took a little longer as there was a moment of panic when I couldn't remember the way back and neither could I remember Pete and Natasha’s address. But I managed to stop, stand and look around me calmly as my head went over the possible options and tried to remember the route that I was trying to remember as I took it. Slowly, very slowly, as panic rose within me, I managed to grub out a faint memory of where I had walked. On wobbly legs I edged tentatively along the route while looking for a clue, any clue as to where I was meant to be. So I inched along until slowly my strength returned and my memories returned. I had recovered from this small neurological seizure and realised that I was absolutely on the right road back to Natasha’s. Then another moment of panic, in my indecision had I lost the key Pete had leant me for the walk. I hurriedly searched my pockets and in a blessed moment of relief found the key and, with shaky hands let myself in. We sat and had breakfast before heading out to church at Emmanuel, South Croydon and as I waited for the family to get ready I saw on the fridge a wonderfully powerful quote.

Maddy, Pete, Zac, Jacob and Natasha
Maddy, Pete, Zac, Jacob and Natasha in London

‘It is not the critic who counts; not the man who points out how the strong man stumbles, or where the doer of deeds could have done them better. The credit belongs to the man who is actually in the arena, whose face is marred by dust and sweat and blood; who strives valiantly; who errs, who comes short again and again, because there is no effort without error and shortcoming; but who does actually strive to do the deeds; who knows great enthusiasms, the great devotions; who spends himself in a worthy cause; who at the best knows in the end the triumph of high achievement, and who at the worst, if he fails, at least fails while daring greatly, so that his place shall never be with those cold and timid souls who neither know victory nor defeat’. Theodore Roosevelt

As we drove to church I tried to engage in the light-hearted spirit of the children teasing Pete about his driving but all the while there was a deep sense in me that I was failing, that the Neurologist was right, that I was never going to beat the neurological dysfunction so was destined to spend my life from this day onwards only ever knowing the bitter pain of defeat until such time as Alzheimers took hold of me and I could either remember nothing or just be living in an empty shell filled with nothing other than the bitter pain of defeat. This weekend had so far reminded me of my inherent weakness and reminded me of the Neurologists warning that I will NEVER be cognitively fit enough to find meaningful employment. That it was only the support of family, friends and Allie that kept me afloat. So if there was ever a time in which I needed to feel the healing hand of God, this was it. As with misty eyes, I followed Allie down the aisle to find our seats in this busy church we had to queue before being able to take a seat and, as we waited, my thoughts turned to what I was going to ask God for. The answer was clear in my head and as my thoughts turned to the desperate set of circumstances I was fighting, I felt a hand on my shoulder and someone standing so very close to me. Rather than spooked, I felt immediately comforted but, as I turned to see who it was, saw the aisle behind me empty, there was no-one there, yet there had most definitely been someone.

Allie and I returned to Edinburgh that day and as the villages, towns, cities and beautiful countryside rushed past I thought hard, and realised what I had long suspected: That I was trying to do too much. That I was trying to be all things to all people, that I had such a lot to offer, but in this damaged state of mind very few were prepared to listen. That few would believe in the balanced daily lifestyle, that it was too simple to be possible, despite the fact that I was living proof that it worked. That few would believe and even worse few would listen, because I am just Archie Douglas, a retired Army Officer with no credence, no initials before or after my name. Just a name, and with a neurological dysfunction about which I have been so honest, and as a result had made me a name to be wary of, brain damaged and so not to be believed or be understood. I have no voice, and with the dire warning about finding meaningful employment rolling around and round in my head like an echo, I realised that I needed to build a platform. Not a soap box, a proper platform from which I can start to be heard and start to contribute to the improving of lives and life chances of so many more people, not only through my balanced daily lifestyle, but also by raising as much money as I can for the Disasters Emergency Committee.

But without a platform I will never be heard, so I have decided to focus my efforts in 5 areas: drama, golf, writing, music and fundraising.

Challenge Medal - front
Challenge Medal - front

Drama. Whereas before, I was quite happy standing in front of 800 soldiers, rank ranged from Brigadier to Private and giving a lesson on counter insurgency operations, I have recently found myself overwhelmed when faced with 6 people I have never met before. I have to relearn many lessons from my childhood and find my confidence in myself again, and drama was proving to be the perfect medium to help me find my confidence in myself again. I have now completed 6 weekly 1 hour sessions of the Beginners Acting class and have just started on 10 weekly 1 ½ hour sessions of the Intermediate Acting Class level 1. There is no show at the end of it, just a brilliant opportunity to work, and have to concentrate for a little bit longer each week, on the instructions of our Acting Coach while surrounded by a larger still group of 10 gregarious and all very different bunch of people. I am also required to learn, off by heart, some monologues which is in itself brilliant training to stave off the threat of Dementia, whose risk spectrum I am now at the very top of. Critically, if I manage to make something extraordinary happen in the world of drama that seizes imaginations, then I have built a platform from which I can be heard and raise more money through increased sponsorship.

Golf and writing. My cognitive and motor co-ordination is good now when the brain is functioning but woeful when the brain tires. My concentration span is still very poor and needs training to bring it back to a point at which I can concentrate for a little longer than 45 minutes while working, and learn to concentrate even for just one golf swing while there are many other distractions. On both areas I tire quickly if I try and do too much in one sitting. So, by taking up the extremely generous hospitality of the Dalmahoy Hotel and Country Club which is just on the edge of Edinburgh so I can cycle or, in high winds or icy conditions, take the bus for the 14 miles from the flat to the hotel and spend the day trying to write and learning to play golf. Writing, golfing, writing, golfing, a little at a time and, bit by bit, to try to get neurologically fitter and stronger. When the sun is out, there are far worse ways to spend a day. Critically, if I manage to make something extraordinary happen in the world of golf or literature, then I have built a platform from which I can be heard and raise more money.

Music. In the background to golf, drama and writing I am also trying to learn and then commit organ tunes to memory. Due to time constraints and access to an actual pipe organ I am limited to learning the organ tunes on a keyboard at home while attempting to learn to add in the feet whenever I can sit at a proper organ. The key to helping to prevent a decline towards dementia is learning to commit these tunes to heart. Slowly, slowly, feet or no feet, I am getting there and have managed to commit one tune to memory so far. I very much doubt that I will ever have the musical talent to make something extraordinary happen in the world of music, but if my story and dogged determination can inspire the musical community of all types and genres to support me in some way then perhaps they can help me build a platform from which I can be heard and raise more.

Challenge Medal - back
Challenge Medal - back

Fundraising. There are 65 million active current accounts in the UK. If I can persuade just 1% of those to sponsor me for just £1 a month then I can raise £650,000 a month for the Disasters Emergency Committee. But to do so I need to start to inspire account holders through the mediums of Drama, Golf, Writing and Music, to do so. To do that I will need to work hard to start to achieve some measurable outcomes in all 4 fields in the hope that I might be able to inspire those who find comfort in life through Drama, Golf, Writing and Music to encourage me on with their sponsorship, in the knowledge that every single pound will go to those in need, at the time of their greatest need, at time of disaster. For to be able to raise millions for the Disasters Emergency Committee will also help me to build a platform from which I can be heard and one day be able to find meaningful employment.

So now I have 4 areas on which I can focus to try and beat my neurological dysfunction while continuing to follow my balanced daily lifestyle, and 5 areas from which I can try to build support and a platform from which I can start to fundraise more and perhaps be heard to start to actually have some meaning to my existence.

It will take some time. A significant period of time, and a huge amount of effort, and perseverance, and dogged, stubborn, and pig-headed determination. This post itself has taken weeks to write in amongst the mass of medical checks and appointments and neurological wobbles whenever I have tried to push myself too far too fast. I have even developed a most annoying habit of typing only every second letter of nearly every word I try to type. A few friends have gently encouraged me to turn to the Dragon Assistant to do the typing for me but to do that would be to avoid the issue ad I I dd ta I wud nvr tan te ban gt bte, or, after editing, I would never get to train the brain to get better. I have to persevere and know that there is a way to improve, to get stronger, which is inevitably the hard way, but by circumventing the mountain I will never conquer it.

As Theodore Roethke once said, ‘Over every mountain there is a path, although it may not be seen from the valley.’ I need to find that path, conquer this mountain and then from the platform I have built highlight the path to everybody else. The right path is not necessarily the easiest one but the right path will be the best path to take.

To make a platform I am working to turn fate on its head and achieve something through the mediums of golf, writing, drama and music. The truth is that I am working against insurmountable odds to make something extraordinary happen.

I am going to follow my path out from the darkness of the valley floor into the light of the mountain top.

I am going to beat this beast, build a platform, and inspire and help many others to beat their beasts, when tragedy or disaster befalls them too.

From now on, as the fug of anti-epileptic seizure medication continues to wear off, and I get to see more light and appreciate the lighter moments in life, I very much hope that my posts will reflect this, and as I beat back the neurological dysfunction and improve my cognitive function and stamina and start to be able to see the light at the end of the tunnel. After 5 years of the dark moments of beast-beating, I hope to be able to reflect the growing light in life as the light at the end of the tunnel grows closer and stronger.

If you have not already done so, please like my Beat the Beast Challenge Facebook page in order to be made aware of any post or news updates on the website and then please sponsor me, even if for just £1 a month, and encourage your friends and family to do the same. I guarantee you that every penny is accounted for and goes to the DEC as not a single penny is lost to costs.

Yours aye

Archie.