Brian Tracy, the North American motivational speaker once said, “I found every single successful person I’ve ever spoken to had a turning point. The turning point was when they made a clear, specific, unequivocal decision that they were not going to live like this anymore; they were going to achieve success. Some people make that decision at 15 and some make it at 50, and most people never make it at all.”

Smile No. 192 - Joyce From Newhaven Edinburgh
Smile No. 192 – Joyce From Newhaven Edinburgh

Back in September 2016, I had a day I will never forget. The day that I learned that my terminal brain tumour, which my treatment team had informed me that – despite a craniotomy removing 40% of the tumour, followed immediately by 30 back-to-back sessions of brain-focused radiotherapy, followed immediately by twelve monthly cycles of chemotherapy, they could not shrink, kill or cure – had disappeared completely. However, I left that oncology clinic not on cloud nine but resolved to keep fighting because I was also told that it was impossible to rid the brain of every single tumour cell, that it only took one cell to be the catalyst for its return, that while they did not know the trigger for the regrowth, they expected it in each and every case such as mine. Shortly after that I started to realise that the problems of balance, motor function coordination, word finding, speech, epilepsy and seizures in which I could not help but fall to the ground, moments of complete disorientation in my home city of Edinburgh, and even in the supermarket shopping aisles, did not disappear with the tumour, and after further batteries of tests I was diagnosed with a form of Neurological Dysfunction and SMART syndrome. I was informed that the expectation remains that I will never be neurologically or cognitively strong enough to work again, that I should aspire to nothing more than volunteering in a charity shop for an hour a week. I was informed that I will be kept under six-monthly observations to try and catch the tumour nice and early when it returns. I was awarded a War Disablement Pension by the MoD which, with the inclusion of the unemployability supplement, became just enough to live on. Many encouraged me to rest. To do nothing but rest and enjoy life. However I couldn’t rest. I had to have a purpose and trying to save and rebuild lives by fundraising for the Disasters Emergency Committee (DEC) while I attempted to get neurologically and cognitively strong enough to one day be able to work again was my focus. Those oncology and neurology clinics, in which I learned what I asked for, the hard truth, were my turning points. The points at which I devised a strategy to not live permanently on benefits, but instead to strive to improve myself, my prospects and those of as many other people as I could through the DEC, because, with the expectation that the brain tumour will one day return, I did not want to leave behind solely what would be written on my gravestone but instead how I had woven myself, hopefully to their benefit, into the lives of others.

While progress is slow, extremely slow with my limited capacity for social media and raising any form of profile, there is indeed, smile by smile, sponsor by sponsor, £ by £, slow and steady progress. On top of all that I truly started to believe that I was getting neurologically and cognitively stronger, that one day I might be allowed to drive again and be fit to work again.

Mary Berrys Haddock In Filo Parcels
Mary Berrys Haddock In Filo Parcels

However, I knew that a big weakness was my inability to focus and concentrate the mind for any period of time beyond twenty minutes without tripping my brain into a SMART attack, followed by the need for a siesta, then head-clearing walk immediately afterwards. So I had been attempting, in a balanced way, to extend those periods of concentration from twenty minutes to forty minutes. Video calls I find more tiring than telephone calls and zoom calls, in which many heads are talking or trying to talk at once, and moving in disjointed ways, completely trips my mind. Two evenings ago, after a cracking day of managing a food shop without incident, while collecting smiles and discovering I had acquired my 61st sponsor, I cooked Mary Berry’s Haddock in filo parcels for Allie and I, which was delicious, and had a thirty minute siesta before settling down for a Family Quiz. My three brothers and three sisters with my mother, stepfather, son, daughter and 16 nieces and nephews all joined together from around the country to hold a family quiz in which we gently teased each other and caught up after so many months apart. I knew it was going to be challenging not to look at the screen too much, so I took a seat in an armchair away from Allie with the computer but close enough to be able to lean across and see everyone. I missed them all so very much, and my nieces and nephews were all growing up so very fast that I couldn’t take my eyes away from the screen and sure as eggs is eggs, after ten minutes, I tripped into a SMART attack. It built slowly. My sight started to go from my peripheral vision inwards. I knew what was coming so shut my eyes in my armchair and breathed long, deep and calming breaths as I listened intently to the family chatting away, but to no avail. As I did so, over time, the army of red ants appeared on my left hand biting and stinging, rendering my left hand and, as they crept up my arm, my entire left arm without any form of motor coordination. Even though I tried to reassure her that I was not too bad, Allie knew that I was starting to really struggle just as the quiz was coming to an end, so as soon as she could she ended the call to come to help. My cheeks and lips felt as if they were swollen up so tight that I couldn’t link two coherent words together. I ended up sounding very much like an adult with severe learning disabilities and as I tried to stand it became clear that my balance had gone too. Poor Allie ended up having to be like my third leg to hold me up and get me to the bathroom to brush my teeth. I couldn’t put toothpaste on my toothbrush but by leaning against the sink and wall, I managed to wave the toothbrush at my teeth in some form of incoherent attempt at brushing but I was determined to try and as I did, from nowhere came deep heaving sobs, while Allie held me up and tried to comfort me. I guess it was the humiliation and frustration of my incapacity but whatever it was it gave me cause to sob great heaving uncontrollable sobs over the sink. Once I had stopped sobbing and managed to catch my breath Allie took, cleaned and returned the brush, before helping me to sit on the loo to pee safely before then taking me to the bedroom to help me undress and get into my pyjamas for bed. Allie placed me in bed, tucked me up and made sure my twitching body was soundly and safely asleep.

The following morning, I woke with what felt a little like a hangover and took myself out for a quiet early morning litter pick to clear my head and feel useful before stopping in a secluded spot on the edge of the Breakwater, nestled in amongst some trees, to pray that God would continue to strengthen me for the path I wished to take. That night could well have been the turning point for me to give up and just admit that I am rendered permanently brain damaged and unemployable, to be satisfied with life in the security of the War Disablement Pension. But that is not me in the slightest. I seek to give thanks for the life that I have, despite its frustrations, by doing all that I can to save and rebuild lives through the DEC.

Smiles Nos. 190-191 - Ailsa And Maggie From Stockbridge Edinburgh
Smiles Nos. 190-191 – Ailsa And Maggie From Stockbridge Edinburgh

May reading this post be the turning point for you in which you decide to give me ten minutes of your time to complete a standing order to challenge me, with your sponsorship for just £1 per month, to keep fighting to prevent my beast of a brain tumour from returning as predicted and to keep using dance, drama, music, navigating over the hills, juggling, litter picking, golf and writing, as vehicles on which to try to retrain and strengthen my brain for future employment.

Thank you.

Keep safe.

Keep being brilliant.

Keeeeeeep smiling

Yours aye,
Archie xx