In the twenty-four days since my last post I have been blessed. Blessed with the unbounded kindness of my darling wife Allie, and blessed with the support of Help for Heroes, and Battle Back Golf, and Scott Thomson of Haddington Golf Club. But I have also been plagued. Plagued by the relentlessness of my condition.

Smile No.431 - Jane From North Berwick
Smile No.431 – Jane From North Berwick

Twenty-four days ago Zeno Gomes, the chair of Battle Back Golf came to formally welcome me into the Battle Back Golf programme after a previous medical assessment had confirmed its validity in my desire to get cognitively and neurologically stronger. He came armed with a golf bag, loaded with all the clubs of the correct size that I would ever need, along with balls, and tees, and a Battle Back polo shirt, thermal layer, and jumper. But most importantly he came armed with a determination to see golf being used as a vehicle to help get me fit enough to be useful again. After a wonderful couple of hours of discussion he withdrew with a plan, and before long I was being advised to get in touch with Scott Thomson at the Haddington Golf Club. He had signed up to give me a golf lesson a month as part of his commitment to the rehabilitation of veterans, wounded in service.

Smiles Nos. 428 - 430 - Scott, Matthew And Ian From Haddington
Smiles Nos. 428 – 430 – Scott, Matthew And Ian From Haddington

With a golf lesson booked and knowing that I would need to practice in small chunks as often as I could, in order not to trip by brain again, I went to see the managing secretary of the Glen Golf Club to see if he might give me permission to use the practice short course of three holes that runs up the spine of the course and is just a seven minute walk from my front door. I had an application to join the waiting list accepted so was at least a waiting member with Help for Heroes promising to pay my first year’s membership to help me get going. While in discussion with the managing secretary, I discovered some great news, that after a refresh of the list I had jumped from 68th to 28th on the waiting list. He was able to look me in the eyes to let me know that, God willing, I should be offered a membership next season as opposed to the previous expectation of three seasons’ time. At this point I asked for permission to use the practice short course so as not to waste the time and resource of Scott Thomson or Battle Back Golf. Amazingly he agreed as long as I did not abuse the privilege. I couldn’t use it every day nor when any member was using it. I left ecstatic that I had an opportunity to practice golf just a seven-minute walk away. No longer was I having to cycle the 28 miles from our home in Edinburgh just to have a go at golf.

My first golf lesson with Scott was first class. He was a most excellent teacher and was empathetic about my condition and its limitations. So we broke things down to the most basic of levels, starting with the whys and wherefores of the design of equipment and why therefore we must strike a golf ball in a particular way to achieve a particular effect. We then put theory into practice, a lot of practice trying to chip six balls into a small area just five metres away. Then we tried to reduce the spread of my shots. It was a little like grouping and zeroing practices on the shooting ranges in which the shape and spread of the group could identify weaknesses in an individual’s application of certain marksmanship principles. Tighten up on the identified weakness, the group tightens and with it marksmanship improves. So we focused on the position of my centre of gravity and with it head position and repeated the drills till the end of the lesson. To make it even better I was sent home with homework in which I had to write a synopsis of everything I had been taught in that lesson. Being honest I was a little miffed at being set homework but, encouraged by Allie, I got on with it and reaped the benefits as Scott’s pearls of wisdom came back to my damaged memory. It was a perfect training drill for a brain-damaged golfer and best of all I got top marks for my efforts on paper from Scott. I was delighted and determined to make the most of this wonderful opportunity.

Smile No 434 - Nicky From North Berwick And Currently Running The Stepping Out Mental Health Project For East Lothian
Smile No 434 – Nicky From North Berwick And Currently Running The Stepping Out Mental Health Project For East Lothian

Two days later I was able to find the practice holes vacant and stole my opportunity to practice. I was sorely disappointed by my performance at first but pressed on and towards the end of the session, as the light started to fade, I started to chip some decent balls in towards the pin. It was starting to sink in, but I knew that I had an awful lot of work to do if I was ever going to be able to hold my own in a round of golf. I started to include in my prayers the hope that I may secure an offer of a membership this season rather than next. I wanted to make the most of this wonderful opportunity and felt the need to be able to expand beyond the practice course onto the course itself to really stretch myself in my brain-training efforts. I was thankful to have access to the practice course but really wanted to be able to use it daily, even more regularly than that in fact. To be able to play some of the real holes as well would be amazing, but for this season, I needed to be grateful for the opportunity I had.

Smile No. 433 - Jason From China; Now Happily Settled And Studying At Edinburgh University
Smile No. 433 – Jason From China; Now Happily Settled And Studying At Edinburgh University

While all this had been going on, Allie had been quietly keeping an eye on the internet on the hunt for a second-hand sailing dinghy that was not a repair project. A boat that was good enough to get on the water and safely sail but that was not going to cost an arm and a leg because we simply didn’t have that to spend. I had been praying and hoping for a dinghy but knew that we would have to be patient and we didn’t even have a slot at the dinghy park at the sailing club in which to park it. I had put my bid in for a slot as soon as we arrived in North Berwick, but knew it to be a very slow process as we were in a long waiting line for a very limited resource. However, if we were offered a slot, we had to be in a position to take it up pronto or it would be offered to someone else on the waiting list. So we needed to find the right boat to be ready and Allie found it. A graduate sailing dinghy built in 1979 out of wood. Designed for two adults to sail competitively, it was the perfect size for Allie and I to sail together and was of a size we could manhandle around the boat park and onto the beach to launch. We went to look at the boat in Dunbar and she was in immaculate condition all shiny under her many coats of varnish. With her rigging tweaked for racing, she was perhaps a little too complicated for me to rig at first but I knew that I could learn it quickly enough with the help of the owner who was determined to come to North Berwick to help me rig it first time in order to teach me. After a thorough check over we agreed to buy it, knowing that it could possibly spend its first year or longer in North Berwick in the garage until we had a slot in the dinghy park. With no driving licence, and no tow bar on Allie’s car, I could not be relying on the kindness of others each and every time I wanted to sail, and the faff of getting the boat to the beach, paying the harbour master the launch fee, putting the mast up, then rigging the boat to sail it for an hour or so before coming back in to derig the boat, load it back on the road trailer and tow it home to go back into the garage just wasn’t worth it. That would quickly take the joy out of sailing. We would have to wait for a slot and the owner was in agreement and happy to teach me how to rig it when the time came.

Allie was also on the hunt for a second hand electronic pedal organ to enable the furthering of my brain training efforts by learning to play the pipe organ. By finding a small electronic one for the home I would be able to practice much more frequently than I can at the church, so really help to retrain the brain a little more effectively. However, finding the right one at an affordable price, was a little like searching for a needle in a haystack and as time went by I became a little less confident that we would succeed, certainly not until our numbers came up in the Premium Bonds.

Smile No.432 - Jennifer From North Berwick
Smile No.432 – Jennifer From North Berwick

In the meantime I had an appointment with my neurologist. I arrived with this good man whom I knew well and whose knowledge and professional judgement I trusted implicitly. He had been with me since my craniotomy in 2014 and had worked closely with me to try to make life with epilepsy, SMART syndrome and a number of neurological dysfunctions, as liveable and comfortable as possible. He had previously had the courage to help me wean off anti-seizure medication when I came to the conclusion that it was the medication that was causing the seizures. I stopped having seizures for quite some time until the return of auras and then absence seizures and was advised to start on a new drug to stop the absence seizures. This drug quickly made me more tired than I ever was, depressed and despairing of life in a way that I had never been before. My brain felt heavier and heavier and more clamped than ever before. It was like being in a vice and deep, deep, deep under water all at same time, and to make matters worse it seemed to make my SMART attacks longer and more drawn out and my neurological wobbles more frequent. It was unbearable and with Allie’s help we managed to convince the epilepsy nurse to agree to a reduction in the amount taken. This improved things significantly and I approached this neurology appointment with the hope that he could wean me off these drugs completely. That he would agree with me that I could live with the auras and occasional absence seizure. It had to be better than being on this particular drug.

That was my hope but unfortunately what I got was a reminder of three things:

  1. That I have epilepsy, that I cannot train my brain out of it and at my age have no hope of growing out of it. That experience says that someone suffering from auras such as mine, when left unmanaged, will develop epilepsy which tends to err on the more serious spectrum of seizure. That in such cases sudden death due to epilepsy (SUDEP) is possible.
  2. That I have a brain tumour in my head and while my team still couldn’t find it, it will grow back, and after the excessive treatment I had received first time around, my treatment options for when it does come back are extremely limited because my brain and body just wouldn’t be able to take further robust treatment. I was reminded of my Oncologist’s expectation that I will one day die because of this tumour rather than despite it.
  3. When I reminded him of my faith and belief that I will not succumb to this tumour, that I will, over time, be able to train my brain to a point of becoming useful again he smiled at me and encouraged me to give it a go, I had nothing to lose, but my brain was too old and too damaged to achieve anything of any significance. My options for future employment will remain extremely limited and I should manage my expectations accordingly.

I knew all that he was telling me and had written about it many times in these posts, but had found a way to tuck it away into file thirteen never to be thought of again. I was going to prevent the tumour from returning and I was going to get fit enough to chair the not-for-profit I so desperately want to set up when strong enough. But to have file thirteen pulled out and dusted off to be reminded of its contents was difficult. There was none of the numbness and the world swallowing you up and blubbing in desperation when first told of my diagnosis and then prognosis. This day, as I sat and was reminded of the hard truth as he knew it, my eyes prickled with tears and a cold chill washed through my body as the reality of my situation started to sink in again. I felt cold and lonely. I wanted God to send an angel to tell my neurologist that he was wrong, that I was saved, that I was going to be okay. Instead I just felt cold as I sat and listened. Cold until Allie took my hand and mouthed to me that it was going to be all right. She was not running, she was true to her word and was going to stand by me whatever.

I felt better and perhaps, through Allie, felt God’s presence in that room. I accepted a new prescription for an anti-seizure drug that I hadn’t tried before and left full of hope that I am going to be okay.

Shortly afterwards I found a quote from an American author and motivational speaker Andy Andrews: “Bite off more than you can chew, then chew it. Plan more than you can do, then do it.”

I smiled when I found it and agreed with his concept, but my huge frustration is only being able to do things slowly and only one thing at a time and only for so long in any one day to avoid tripping my brain into an attack or seizure. I had to live my life in balance but it didn’t mean that I couldn’t try to push myself a little harder each day to try to stretch myself a little each day in order to try to get stronger. So I was going to try to bit off a little more than I could chew, and already had a plan to do it, so just needed all the right bits to fall into place.
My neurology appointment jolted me out of my growing complacency and inspired me to pray harder and to work smarter and to keep bloody fighting. The best bit – my prayers were answered so very quickly:

  1. Allie found a second hand electric pedal organ being sold for a great price in Gullane. We went to see it, loved it, bought it and today it arrived to help me with my attempts to learn to play the pipe organ.
  2. The owner of the boat brought it to store in our garage and within a week was back to show me how to rig it in the slot we had just been offered in the boat park.
  3. On Easter Sunday I opened an email from the managing secretary of the Glen Golf Club offering me a membership effective from payment of the fees now due!
  4. Even better than that, on the day that the previous owner of the boat was available to show me how to rig it there was also a ‘get back on the water’ session being run by the sailing club. The wind was perfect and while I didn’t have a crew I used to single-hand my boats before my tumour and was confident that I could do so again. With three safety boats out on the water, it was the perfect day to take this boat out for a first sail.

My prayers had been answered but, sadly, on that first sail, as I tacked, I discovered that the varnished deck was horribly slippery, my feet went underneath me and I came crashing onto the leeward side of the boat breaking the tiller extension in the process. I capsized and the boat quickly turned turtle, making the righting of the boat far harder. Since joining, the sailing club had done all they could to get me safely back on the water and the Officer of the Day had come to check what boat I would be in. He had clearly set one of the safety boats to keep a close eye on me, for as I came to the surface a safety boat was already on hand offering help. I thanked him but asked to be allowed to right her myself. “GREAT TRAINING” I shouted back at the safety team with a grin. They gave me the thumbs up and shadowed me to make sure I could right the boat okay. I discovered that while I was fit and healthy with all my walking, I hadn’t been going to the gym or playing sports for quite a few months and had lost a lot of core strength. As a result, once the boat was upright and settled on the water, head to wind, my efforts to get myself back in the boat from the water were far more laboured than they needed to be which led to my cracking a rib in the process. It was a spike of pain and I quickly realised I was going to have to head for the harbour. I let the safety boat know that I was retiring and it shadowed me in. As I sailed back I was thankful for this boat because before I capsized she was a real joy to sail. I was also honest with myself. As I was sailing single-handed, I was noticing that my brain was really struggling to capture all the information from the jib (front sail), and the main sail, and the tiller, and the wind and the water, while also looking for other boats or obstructions that might be a danger. Each time I looked from one thing to another my brain took just a few seconds to catch up to the new point of view so, as a result, in all honesty I really wouldn’t have been able to single-hand in anything windier than this gentle afternoon, even though I used to. Right now I didn’t have that capacity. But I had a boat and a slot in the harbour, I just had to find a crew each time which would make me safer and might actually make the sailing more enjoyable.

Smiles Nos. 435 - 437 - Callum, Angus And Ali From Haddington
Smiles Nos. 435 – 437 – Callum, Angus And Ali From Haddington

So I keep praying because I fear that if I stop praying all these wonderful coincidences will stop happening.

God willing, by using the vehicles of golf, music, water sports 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.

On this daily battle back to fitness I continue to try to save and rebuild lives through the Disasters Emergency Committee. 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 £17,644 for the DEC with every single penny raised – thanks to the generosity of the Royal Bank of Scotland, Webb and Wallace Accountants in Doune, MH Creations 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 at . I guarantee that every single penny raised gives me strength 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.

After a long and difficult day at the Neurologist I took Cocoa for a walk and as I watched the sunset over North Berwick I swore that I would never let the sunset on my love of life.
After a long and difficult day at the Neurologist I took Cocoa for a walk and as I watched the sunset over North Berwick I swore that I would never let the sunset on my love of life.

Keeeeeeeeeeeep smiling

Yours aye with love and gratitude