For the last seven years, since starting my battle back from my brain-damaged state to one in which I might become useful again, one in which I would be neurologically and cognitively strong enough to chair and make happen the not-for-profit, which I had started putting together prior to diagnosis, that was bent on breaking the cycle of reoffending in our disadvantaged and disengaged young people; a state in which I would have the capacity to raise more than I currently am with which to save and rebuild lives around the world through the Disasters Emergency Committee, I have been trying to find ways to bring my epilepsy, SMART syndrome and various neurological dysfunctions, under control – to get cognitively and neurologically stronger again.

Smiles No's 448-451: Derek, Rihanna, Morris, Tipsy The Happy Dog And Eilidh From Motherwell - Happy Recipients Of A Lost Dog Returned
Smiles No’s 448-451: Derek, Rihanna, Morris, Tipsy The Happy Dog And Eilidh From Motherwell – Happy Recipients Of A Lost Dog Returned

Over the last seven years, despite covering over fourteen thousand miles under my own steam ascending close to a million feet and capturing nearly five hundred smiles, every one of which required an exhausting conversation, while completing two chapters of my book, while following my balanced daily lifestyle to the letter, I struggled to manage more than a few days without some sort of epileptic or neurological episode.

Over the last seven years I have seen little improvement and continue to battle with epilepsy and the management of it which then directly impacts on the frequency and severity of my SMART attacks.

Over the last five weeks I have been gently introducing a new anti-seizure medication after the last one I was on had slowed my brain almost to a standstill. Over these last three months on new medication, I have suffered from two severe SMART attacks which seemed to last longer and drive deeper than ever before. I have been walking and praying hard for God to cast them from me yet this Sunday 29th May, as I sat in church a SMART attack ravished me in my pew. It started in my left hand rendering me unable to hold my hymn book without dropping it, then the on/off man turned up and sat at the switches to my sight, hearing, speech and breathing. He was playing with my switches and turning my sight off then on, then my hearing off then on, then messing with my breathing, so I was in a complete mess. I couldn’t follow the hymns or even hear the beautiful music coming from the organ and the choir, and I had not the breath to sing if I could hear them. Allie stood beside me throughout trying to guide me through the service, while doing her best to reassure the deaf and blind man with no feeling in his hands and fighting to breath beside her that I would be fine. I was searching for God at this point and not being able to see or hear or feel Him and with my senses and life support systems in complete disarray I felt totally alone in the midst of His house surrounded by the wonderfully caring congregation with my darling wife right next to me, holding me, guiding me, loving me. Yet still I felt abandoned and with little control of my emotions, since the tumour damaged my emotional cortex, my frustrations and fears and loneliness burst out of me in great heaving sobs. I did my best to contain them yet the harder I fought to hold them in, the more dramatically they would burst out of me. Allie offered to have communion brought down to me but I wanted to go to God’s altar and beg Him to cast this beast from me. Yet as I approached, on Allie’s steadying arm, with the choir on either side of me suddenly nothing, just the sound of the sea in a conch shell, no music, the mouths were moving but all I could hear were just the distant sounds of the sea and then, just feet from the alter rail, my sight went again too. I was deaf and blind. I could now feel in my hand Allie’s guiding hand but despite that felt, once again, so terribly abandoned and alone forcing yet another gasping sob from my shaking body. The bread of communion was placed in my hand and knowing I couldn’t drink from the cup as with swollen lips, cheeks and tongue it would spill from my mouth, when the wine was offered I took my shaking hand to dip the bread in the wine. After communion I stopped with Allie in the Lady chapel to pray briefly then made our way back to our pew. As the service went on, so our prayers were slowly answered in that the on/off man went to sleep but I was left very wobbly, twitchy and shaky with the most godforsaken hangover that lasted for the rest of the day making every step of walking the dog and trying to force the migraine from my head, every single step, a nagging painful reminder of my frailty.
The following Monday 1st June in which we had a fleeting visit of one of our greatest friends and my eighteen-year-old godson, despite having a lovely gentle day with lovely gentle company, I was struck by another SMART attack. This one not as deep and disruptive as Sunday’s, but meant that hitting some golf balls with my godson after supper, as was the plan, was no longer an option as the motor function crept out from my left hand leaving me struggling to manipulate my fork and had instead to ask Allie to cut up my sausages. These I devoured with the sweet potato mash and leeks as quickly as I could, knowing that my ability to swallow was shortly to go and sure enough my tongue, lips and cheeks swelled rendering me unable to speak clearly followed shortly after by my throat, rendering me unable to swallow. The migraine followed quickly and stayed with me step after step as my brilliant godson guided me out across the now empty golf course to walk the dog and attempt to clear my head. So brilliant was he that he even offered to pick up after Cocoa to stop me from having to do it knowing the pain it would cause bending down with a migraine in place. As we walked, a number of people I knew locally, even members of the congregation from church who I would bump into occasionally popped out from their houses or from other paths they were walking to say hello and check on my welfare. The following morning, the Rector from church called to ask how I was, to make sure that I recovered from Sunday and to see how he might help. This all cheered me greatly, and I started to see that I was not abandoned by God, that while He might not appear in a thunderbolt nor as a burning bush or booming voice in the clouds or in the presence of an angel, He does, in His own mysterious way, walk with me through Allie, family and friends being in the right place at the right time, through the enabling of happy coincidences, He walks with me.

The American popstar, Cher, once said, “If you really want something, you can figure out how to make it happen.”
So far, I have failed to get neurologically or cognitively stronger and remain an awfully long way away from chairing my not-for-profit or raising millions to save lives – yet I remain determined so to do. A couple of old friends from the Regiment have suggested that I should retire and live out my life on my war disablement pension, happily enjoying life in this beautiful place called North Berwick with my wonderful wife who has done nothing but encourage me to do all that I can to get stronger, to enjoy life. That is indeed tempting. I could be sailing, power-boating or ocean rowing, and working on the land as a conservation volunteer nearly every single day, but I would never be content. I will never forget the Mums, Grannies, Aunties, Sisters, Dads, Grandads, Uncles, Brothers and, in some cases the young people themselves, begging me, in floods of tears, to make my idea a reality. I promised them then that I would make it a reality and will do all that I can so to do.

I have had my neurological team and an occupational therapist and an assessment team from Help for Heroes confirm independently that learning to play the pipe organ and learning to play golf and making conversation are wonderful ways, when done little and often, to retrain and strengthen my brain. So, the path to achieving something worthwhile with the wonderful life that I have been blessed with in this wonderful place is clear. However, at the moment, the path is cluttered with other things that I would like to do. Therefore I must clear the path of clutter and focus on those things that could help me secure a stronger brain in order to save and rebuild the lives of those starving even, as I write, by fundraising for the Disasters Emergency Committee, and to save and rebuild the lives of those trapped in the cycle of reoffending who have so much to give though don’t know it yet, through the chairing of the set up and delivery of my not-for-profit.

Smile No. 452: Sarah From North Berwick
Smile No.452 – Sarah From North Berwick

So my focus for the next few years is learning to play golf, learning to play the pipe organ, capturing smiles to engage in conversation in attempts to fundraise for the DEC and auditioning for and hopefully securing a part in a performance being planned by the East Linton Drama Group in order to be surrounded by people who will want to talk and to be in a position in which I have to understand and follow simple instructions, while keeping on trying to write my book little by little.

I will be busy, wonderfully busy, but not as busy as I would strive to be should I succeed in getting strong enough to chair my not-for-profit.

Each and every day brings its own surprises. Some are good, most are bad and each is a challenge. Yet I strive day after day to leave these challenges behind me to get useful again. I keep praying to keep those happy coincidences happening.

God willing, by using the vehicles of golf, music and writing, I will one day be cognitively and neurologically strong enough to set up and chair the not-for-profit I was planning shortly before diagnosis.

Smiles Nos.453-454 Mums Sandra And Nikki From North Berwick
Smiles Nos. 453-454: Mums Sandra And Nikki From North Berwick

On this daily battle back to fitness I continue to try to save and rebuild lives through the Disasters Emergency Committee (DEC). They have come to prominence for all the good works done in the Ukraine, but we must not forget the millions, whose lives the DEC continues to save and rebuild, in countries such as Afghanistan, Bangladesh, the Democratic Republic of the Congo, India, Somalia, South Sudan, Syria and Yemen.
So far I have managed to raise £19,172.60 for the DEC with every single penny raised – thanks to the generosity of the Royal Bank of Scotland, Webb and Wallace Accountants in Doune, MHCreations in Glasgow and Key facilities Management in Doune – going to save and rebuild lives through the DEC.
This money saves lives and gives me the resolve to make more of mine. Please sponsor me to keep fighting with just £1 per month . I guarantee that every single penny raised gives me the strength to keep fighting and goes to save and rebuild lives through the DEC. Not a single penny is lost to costs.

Thank you.

Keep safe.

Please keep me fighting.

Keep being brilliant.

Keeeeeeeeeeeep smiling

Yours aye with love and gratitude