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Beat The Beast Challenge

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The 14.44 cycle along the disused railway and canal path in to the Dalmahoy Hotel and Country Club in 20 mile an hour winds this morning (20th September) seems to be an apt simile for these last 5 years and a month exactly since starting the challenge. It has been a long hard slog in which I have had to keep the head down with legs pumping like stink to safely get through those gusts without getting blown off course and into the canal. A long hard slog in which I have had to surmount many huge, frustrating and seemingly impassable obstacles like whole trees blown across the cycle path with mud filled ditches flanked by huge stone walls on either side of the path. At times it felt as if there were only two options. Give up, or fight like hell to get through and over this obstacle no matter what cuts and bruises one picks up in the battle. But there have also been many wonderful and beautiful moments providing hope, like bright iridescent rainbows, like fledged cygnets taking their first flight down the canal and gaining just enough height in the wind to skim just above my helmet. Like the fledged magpie fighting so hard to get airborne and stay just in front of me on his clumsy, undulating and determined flight. Like the pair of kingfishers sheltering from the wind and taking flight down the canal just ahead of me. But with hard work and dogged determination I make it to the end of the treatment journey cured of the brain tumour. Healed. Although I cannot officially declare myself healed, on this day, nearly 5 years after diagnosis on 16th Oct 2013 I have beaten the prognosis and they still cannot find the tumour.

Now at Dalmahoy however the simile continues, but now with the medium of golf. I have been trying to learn to play golf for a long time now with a huge amount of support and, much like my battle with my damaged brain to get stronger again and fit for work, the journey is a long and at times tortuous one. I will take many steps forward and play some wonderful strokes and even holes, yet, the very next day, it can be as if I had never taken a lesson. It can feel almost entirely pointless to continue trying. The temptation to just pack away the clubs and hang a for sale sign on them can at times be very great indeed. Similarly, the problem with a neurological disability such as my neurological dysfunction is that it has an uncanny knack of sitting in the background, lurking unseen, luring me into a false sense of security, before jumping up and slapping me square in the face.

These last couple of weeks have been witness to the inevitable slow and steady progress into Autumn in which the wind starts to bite. The leaves of the trees start their colourful flourish before finally being torn from the branch to settle on the ground to rot and return those nutrients into the circle of life thus feeding new life. There have been similar parallels for me as I continue my slow and steady reduction of my anti-seizure medication towards a big fat zero and a new, much freer unsuppressed life with a confirmation that I no longer have epilepsy. It has indeed been windy over these last couple of weeks and the temperature has indeed been dropping, but my Twobbles have been reducing noticeably in frequency and strength which allowed me to enjoy two wonderful events without incident.

Firstly my first day on the Drama for Beginners course in the Royal Conservatoire Scotland (RCS), Glasgow. I was delighted to find a fun and gregarious crowd of mixed age ranging from early twenties to mid-fifties and of mixed ethnicity. All were there for many different reasons but whatever the reason, to engage with the material over these 2 hourly sessions, would help to improve confidence, would teach new skills, would re-train and strengthen brains, would examine one’s propensity towards acting as a profession. For me it was an evening of confidence building games in which one could get to know each other and start to explore one’s capacity for acting, while building the team with whom I would be spending the next year. In one particular game we were asked to discuss with a nominated partner 3 interesting things about ourselves. I was paired up with Saied, a delightful lady much senior to me of Pakistani descent. She speaks wonderful English but as the entire course of 14 students tried to be heard in their pairs a lot of my 3 interesting things were getting lost in translation. When it became our turn to reveal our 3 interesting things about our partner I introduced Saied with her three interesting facts and Saied started by telling the room that I was an ex-soldier and had Post Traumatic Stress Disorder. I had to gently interrupt her there as Saied had clearly misheard me and fallen fowl of the classic preconceived idea, riven by crime dramas, of ex-soldiers with operational experience having been exposed to traumatic events and therefore being plagued by the debilitating and aggressive symptoms of Post Traumatic Stress Disorder. This is, as you all know, not the case with me so was clearly untrue and not a seed of doubt or concern that I wanted sown, so after apologising for interrupting, I corrected Saied by telling the assembled class that a blunt force trauma sustained back in 1996 had triggered a brain tumour that grew for 15 years undetected. The room sat in wide eyed silence. I looked at Liz our teacher and she encouraged me to continue. I brought them up to date and was able to finish with the good news that it was looking increasingly likely that I had beaten the tumour and that while I was diagnosed with Neurological Dysfunction and SMART Syndrome, there was light at the end of the tunnel and acting was perhaps becoming an increasingly important part of my strategy of re-training and strengthening my brain towards finding future employment. I finished, and the class burst into an impromptu round of applause. I knew not how to react but did, after two hours of team bonding and personal examination, appeal for the class to give 10 minutes of their time and £1.00 a month for the Disasters Emergency Committee through my challenge to beat my beast of neurological dysfunction. I survived the entire evening with only the odd random twitch, head wobble or single sentence of minced words with neurological fat tongue. A wonderful evening all round.

Aarti And Glens Wedding - Norton House Hotel
Aarti And Glens Wedding - Norton House Hotel

Secondly was a day of delight at Norton House Hotel. Our dear friend Aarti was marrying our new friend Glen at Norton House. Aarti is of Indian descent and Glen of Ayrshire heritage so it was a colourful wedding with many clans represented through their many and resplendent tartans along with the wonderful colours of the Orient reflected in much of the decoration of the hotel. It was a wonderful event in which I was able to engage in conversation for much of the meal while stretching one glass of red wine out over the entire meal and into the speeches, before then dancing dance after dance after dance during the Ceilidh.

We had a late breakfast and lazy start to the Saturday morning before heading home. Over these last few months a significant number of people including fellow Golfers at Dalmahoy, fellow thespians at the RCS, employees at the Tesco I shop at on Broughton Road and who have had to help me on numerous occasions, and fellow celebrants at the wedding had said “Archie take a rest. Why do you bother? I would have given up long ago. Just take the War Disablement Pension and start a hobby. Do whatever you want to. Make the most of it.”

Their points and concerns were normally well-made and well-meaning and there have been many times in which I have been tempted. But there are so many people out there whose need is greater than mine that I can help in my own wee way. Besides I have never been one to just twiddle my thumbs and wait. Doing what I can to improve the lives and life chances of as many people as I can in as many ways as I can through the telling of my story, and fundraising for the Disasters Emergency Committeee, gives me a sense of purpose, a very reason for being. I have never been very good at knitting and there are only so many antiques programmes that I can watch in any one year.

Besides all that, if I ever want to be truly confident that I have actually beaten the epilepsy I needed not to wrap myself in cotton wool during the gradual reduction for fear of triggering a seizure. If I really and truly had faith that I was rid of the epilepsy, I needed to prove it to myself by working hard to be productive each day, to see how far I could push myself neurologically without the suppressive effect of the anti-seizure drugs, to see how far I could push myself without having a seizure.

So on Sunday I performed the Welcome Duty for church which requires a significant amount of small talk, which I have always found exhilarating but exhausting since brain surgery, in welcoming friends and new celebrants alike. Then on Monday I cycled the 28.88 mile round trip to Dalmahoy for a day of Golf practice and writing before, on Tuesday, a day of administration including two 2.5 mile walks, a 2.87 mile run, shopping from the bike with another 6 mile round trip to Tesco to make lunch and cook supper in time for Allie on her return from her seminar while also doing some more writing and catching up with emails before on Wednesday, making my packed tea for my RCS evening course, attending a doctor’s appointment, before taking 3.5 hours to complete the 2.5 hour journey to RCS for the course on the jam-packed buses in the face of Storm Ali, and returning safely at 10.50pm that evening, before on Thursday, another 28.88 mile round trip to Dalmahoy for another session of Golf practice and writing.

As Allie and I ate the delicious supper she had cooked freshly for me we both remarked simultaneously how much stronger I seemed to be becoming: how I was starting to sleep better, Twobbling less and with the exception of walking into door frames and the occasional ice-pick headache, generally appearing a lot more stable. We were filled full of hope for the future and my mind started to drift towards the wonderful possibilities of employment. I started to build a mind map of what needed doing when and in what order in order to enter the jobs market at the right level and try to secure the job that would fulfil me the most.

I slept well that night and woke fresh as a daisy and full of expectation on the Friday morning. I set off for a 1.7 mile brisk morning walk before coming home to have breakfast. Unusually I needed to sit on the loo before breakfast and as I did I noticed that my eyesight was starting to blur and my peripheral vision starting to close in. I recognised these symptoms as the prelude to a SMART attack and with the dread of the pain of an unstoppable migraine coupled with the stroke like symptoms of loss of feeling and sensation with functional limb weakness down one entire (normally the left) side, coupled with the apparent swelling of the lips, tongue, cheeks and neck leading to a fear of suffocation or strangulation, as had very nearly seen the death of me had I not made it to hospital during a previous attack a couple of years ago, fresh in my mind, I decided to take breakfast with Allie. By the end of breakfast the headache started to develop further so I decided to take myself out for a 0.7 mile walk to try and blow it away on the breeze. The walk did nothing and with a really important meeting to secure the proceeds from the sale of my flat in Doune invested in Trust for the children’s future I decided to take to the sofa and try to lose myself in an episode of the Antiques Road Trip. Slip into a sleep before waking for a quick lunch before the meeting. Allie woke me having made the lunch but I just could not face eating so she bagged it to take with us while I brought myself back into the land of the living. My peripheral vision had returned and the headache settled slightly so I decided, much against Allie’s better judgement, that we should proceed with the meeting. Besides I had Allie, a Trustee of the Trust to help me. Before we left I had to put on my shoes but just could not tie my laces. I had lost all control of my hands so had to ask for Allie to tie them for me. Like a 5 year old I stood obediently, propped against the door, as my laces were tied. Allie took my hand and guided me down the steps to the bus into town and offered many times to call and cancel but I just did not want to give in so held my head in my hands as we pounded, shook and rattled over every bump in Edinburgh’s cobbled streets. These streets were not designed for migraines.

It was wonderful to meet my dear friend Alex again and to see another dear friend whom I had advised and encouraged in her successful fight with breast cancer but my head was already taking over. My speech was becoming noticeably laboured as I struggled to formulate words and my sight was appallingly fuzzy. Alex, another convert to my balanced daily lifestyle, was armed with green tea and all the notes that we needed to make decisions. I was able to confirm the express intent of the Trust in accordance with the Trust Deed and the level of risk I was prepared to take, but as Alex started to go over the various investment options so the shapes and colours of the pie charts and graphs started to swim in a sea of echoey words. I was now lost to the SMART attack and succumbing to the migraine and loss of muscle function. I just couldn’t keep up with what was being discussed. I trusted Allie implicitly so was not concerned about that, but knew that I had one point that I had to make. That I could not afford to lose this money by taking too great a risk for the children. As the attack deepened it became increasingly clear to me that I might never be strong enough to sustain myself in fulfilling employment. I had one last thing to say through whisping, lisping and nipping lips, “Alex, I might never ever be able to provide such an opportunity for the children again so cannot afford to lose this money now.” He reassured me with what I already knew, that the children’s Trust was as safe as it possibly could be with him. That he would do his best. Then he stood to order and pay for a taxi home. He refused to let me home on the bus in this state.

As I travelled home, hugely thankful for that fateful first meeting with Alex back in December of 2012, and for that day that I accidently stole Allie’s seat on a train, I was given the proverbial slap in the face. As the head pounded hard as I held my head over every bump in the Edinburgh cobbles, I was reminded that I was a long, long way away from ever being strong enough for fulfilling employment. Just to reaffirm such a horrific thought, as I attempted to eat a small fish supper bought as the more sensible option in these circumstances it became clear that I couldn’t actually eat. I was struggling to manipulate the cutlery in my hand so was dropping food everywhere. I was struggling to control my swallowing reflex so was close to choking on several occasions so had to eat such small bites at each turn. I couldn’t peel my orange nor eat a segment without coming close to choking so Allie had to peel the orange and chop up each segment to make it safe to eat. I was once again like a 5 year old incapable of looking after myself.

That night was spent holding my head as Allie did the maths and provided Paracetamol in an effort to numb the pain. Nothing numbed the pain and as everything swam around me for hours on end I wondered if this particular SMART attack was ever going to end. My left hand went numb once again with sharp nipping across the surface of the skin much akin to having set my hand in a red ants’ nest while it twitched under the duvet causing me alarm on several occasions when it met up with my right hand unexpectedly. Without feeling in the left hand and clear feeling in the right hand my right hand would meet this warm twitching thing with many legs under the duvet, yet with no further reference for the brain, it would take some time for the brain to realise that this unfeeling beast was in fact my left hand. A surreal experience to say the least but with a still throbbing head I did eventually manage to drift into a fitful slumber.

I woke with one hell of a hangover having not touched a drop to drink except water but thankful that those last 24hours of agony and frustration were over. The sun was out and the day beckoned another day of fun with my daughter Heather at the Queen Margaret University Open Day. The mail dropped through the door and in it was another card of encouragement from the wonderful Mirren whom I had also met on a train..

Always Remember
You are Braver
Than you believe
Stronger than you seem
Smarter than you think

And on the back in a hand written note

Archie
Keep strong!
Love from
Mirren
X

As Allie drove us up to Queen Margaret University I reflected over the day before and realised that no matter how frustrating yesterday’s slap in the face had been, I must not lose faith in my quest to do what I can to improve the lives and life chances of as many people as I can in as many ways as I can through the telling of my story and fundraising for the Disasters Emergency Committee. Such activity ensures that my final productive years are not for nothing but instead spent with a purpose, a very reason for being. And despite all the pain of the previous 24 hours there was not a whiff, not even the slightest whiff of an epileptic seizure and that is really good news.

Mirrens Wonderful Card
Mirrens Wonderful Card

So please challenge me, through your sponsorship, to beat my beast of neurological dysfunction. Even if it is for just £1.00 a month. Every penny goes to the Disasters Emergency Committee and gives me further encouragement to keep going. To strive to be productive.

Meanwhile the challenge in numbers since the start on 20th August 2015

  • Years spent Beating the Beast: 3.08
  • Months spent Beating the Beast: 37
  • Weeks spent Beating the Beast: 148
  • Days of challenge activity completed: 740
  • Total Miles Cycled: 2,556.96. Both the cycled and walked distances are close to the equivalent distance of Edinburgh to Cairo in Egypt.
  • Total Miles Walked: 2,313.11
  • Total Miles Run: 520.03 The equivalent of Edinburgh to Aalberg in Denmark.
  • Total Miles Paddled: 17 The equivalent of Edinburgh to Dunfermline.
  • Total Distance Cycled, Skied, Run and Rowed in the gym: 271.765 miles which has taken me all the way down to Solihull in England.
  • Total Distance Swum: 19.44 kilometres or 12 miles still bobbing around in the outskirts of Edinburgh!
  • Total Miles covered under own steam: 5,698.305 The equivalent of Edinburgh to Seoul in South Korea.
  • Total Height Gained under own steam: 277,223.11 feet. At over 48 miles and climbing I am now reaching the outer edge of the Mesosphere of Earth’s Atmosphere.
  • Total Golf Balls Played: 1,985
  • Total Holes Played: 157
  • Mountains Climbed: 8
  • Hills Climbed: 46
  • Days of Voluntary Activity: 22
  • Monologues learned and performed: 3
  • Songs and Piano Accompaniments learned and performed: 0
  • Weight Training Sessions: 25
  • Weight shifted: 5kgs lifted over 10,002 metres, the equivalent of pulling a 5kg weight from Edinburgh to Musselburgh.
    or 63,804kgs, 63.804 tonnes moved over a metre, the equivalent of pulling a Challenger Armoured Repair And Recovery Vehicle over a metre.
  • Aerobic Circuit Sessions: 36
  • Press Ups: 4,384
  • Pull Ups: 378
  • Sit Ups: 10,180
  • People Met and Hands Shaken: 825
  • Pots of tea shared: 62
  • Pills popped: 3,481
  • Total Almonds Eaten at approx. 8g a day: 8.16kgs
  • Total Apples Eaten: 750
  • Total Bananas Eaten: 750
  • Total Blueberries Eaten at 40g a day: 30kgs
  • Total Brazil Nuts Eaten at approx. 13g a day: 13.2kgs
  • Total Bread Pumpkin and Sunflower seeded (preferably wholemeal) Eaten at approx. 2.5 slices a day and with approx. 18 slices in each loaf: 104.16 loaves.
  • Total Butter Eaten at approx.. 20g a day: 20.4kgs
  • Total Carrots Eaten at 100g a day: 75kgs
  • Total Dark Chocolate 85% Eaten at approx. 14g a day: 14.28kgs
  • Total Eggs Eaten: 750 (62.5 dozen)
  • Total Flaxseed Eaten at approx. 37g a day: 27.75kgs
  • Total Green Tea Consumed at 3 cups (237ml each) a day: 519.11 litres
  • Total Mango and Passion Fruit Smoothie consumption at approx. 150 ml a day: 112.5 litres Total Milk consumption at approx. 330ml a day: 247.5 litres
  • Total Oat based muesli and Granola Eaten at 110g a day: 82.5kgs
  • Total Oily Fish Portions: 148
  • Total Oranges Eaten: 750
  • Total Other Berries (Raspberries or Strawberries) Eaten at 40g a day: 30kgs
  • Total Pumpkin Seeds Eaten at approx 9g a day: 6.75kgs
  • Total Raisin and dried Cranberry Mix Eaten at approx. 15g a day: 15.3kgs
  • Total Red Grapes Eaten at 60g a day: 45kgs
  • Total Red Meat portions: 148
  • Total Spinach, Rocket and Watercress Salad at approx. 26g a day: 19.48kgs
  • Total Sunflower Seeds Eaten at approx. 8g a day: 8.16kgs
  • Total Tenderstem Broccoli Eaten at 50g a day: 37.5kgs
  • Total Tomatoes Eaten at 60g a day: 45kgs
  • Total Vegetable portions of any type additional to those specified as part of my balanced daily lifestyle taken alongside tea meal (at 2 additional portions a day) and as completely vegetarian tea meals: 1,860 portions
  • Total Walnuts Eaten at approx. 4g a day: 30kgs
  • Total White Fish Portions 296
  • Total White Meat portions 296
  • Total Yoghurts Eaten: 750

My balanced daily lifestyle has helped me to reinforce my most excellent medical treatment to beat my brain tumour that was supposed to be terminal and has so far staved off all the possible side effects from such a robust treatment regimen as that I had to endure including 12 monthly cycles, an entire year of Chemotherapy. None of my vital organs have been adversely affected by the treatment and I have so far managed to stave off the threat of diabetes and brittle bone disease and other nasty diseases that can be associated with such a robust regimen of medical treatment. True I am fighting Neurological Dysfunction caused by the damage to the brain done by a combination of the tumour, the treatment and each and every epileptic seizure. But I am using my balanced daily lifestyle to fuel myself like a formula 1 racing car, and exercise my body and brain, in order to strengthen it, protect it from disease, and provide the best possible nutritional support to aide my efforts to retrain and strengthen the brain while attempting to head off any decline towards Dementia or Parkinson’s or any other form of neurological disease.

For a healthier and much happier life, I implore you all to seize responsibility for your own health, follow my balanced daily lifestyle and in so doing greatly increase your chance of preventing disease from ever happening in the first place. I so very much wish that I had developed my balanced daily lifestyle 20 years ago. It really isn’t that difficult once you get into the swing of it. Neither is it expensive, in fact I have found it cheaper because I am wasting so little food now. Neither am I trying to sell you anything. You really can have a much much healthier and happier life with just the fruits, vegetables, protein and calcium sources available from your local shops with the requirement to supplement only, with a little turmeric and a tiny amount of Vitamin D. No extra lotions, potions, diplodotions or specialist equipment needed.

Mirrens Wonderful Message
Mirrens Wonderful Message

Finally, so far I have managed to raise - £18,066 That is great but it could be so much more if I can just get those who are yet to do so to give me 10 minutes of your time and sponsor me even if it is for just £1.00 per month. Every penny counts in the efforts to save lives and rebuild communities for those that need it most, at times of disaster. I guarantee you that every single penny raised is accounted for and goes to the Disasters Emergency Committee. Not a single penny is lost to costs.
Thank you
Keep eating the tenderstem!

Yours aye
Archie
Deo Juvante
We can all Beat our Beasts!