I promised you that all future posts would bring you the light from the darkness but sadly this last few weeks have provided little opportunity to report on those moments of light. This last week or so has seen a number of challenging moments like the morning I was whistling down the Dalmahoy road towards the Dalmahoy Hotel and Country Club on my bicycle. I had had a good 14 mile cycle to this point, and after a good uphill at speed to this fast little downhill I was breathing hard. Sucking air in hard and as I did so, I was nearly struck from my bicycle by a wee beetle. It flew hard into my mouth and struck the back of my throat before tumbling down into my oesophagus. The shock of this uninvited and unknown guest nearly knocked me off the bike but I thankfully managed to stay on and then proceeded to try and encourage this wee beastie up from the depths of my throat. In a noise similar to that most horrendous noise of a gentlemen trying to snort up an excess of catarrh before spitting it out, I was trying to snort up the beetle before spitting it out but failed, so opted to swallow down this additional protein ration and be very thankful for God’s blessings. I tried hard to swallow down the beastie, but it was not to be dislodged and by the time I was working my way up the steep slope towards the hotel I could feel this wee beastie making its bid for freedom. It was a most uncomfortable and tickly feeling that made my nose tingle and run too as it clawed and scrambled its way, like an ice climber armed with crampons and ice axe, up the slippery slope of my throat before reappearing in my mouth. I did a quick check to make sure that no one could see me spit, then spat this wee chap forward and hard out of my mouth to see his wings spread wide from under his blue black shell and fly off from out of a small ball of spittle.
Just the other day I took myself off for a short 2 mile cross country 20 minute run as a break after an hour of practicing very poor golf with little cognitive discipline and then trying to work for an entire hour. My head was spinning, my balance shaky at best, and my vision blurred, but I had been here many times before and knew that some vigorous exercise was a most excellent tonic to prepare me for lunch and further golf and work. I had a pre-planned route along footpaths marked on the map. They were not public rights of way, just footpaths worn in over centuries by the very activity of sheep herders, cattle drovers and the farmers tending their crops, and by keepers, beaters and guns maintaining the wood for sport. I knew therefore that they would not be prepared paths but hoped that they would at least be defined paths as marked on the map. At first they were, but soon degenerated into flat areas thick with thistles, nettles and brambles. On this hot and sunny day I was attempting to run in shorts and a t-shirt but found this clothing to be wholly inadequate as my legs became increasingly numb at the hands of these most relentless of plants. So, I opted for a diversion and jumped a fence into a field of sheep. As I followed the path of a burn to a new field junction, enjoying the sunshine, grass and relatively easy underfoot field, I turned a bend and startled a herd of heifers with their calves. I had lived in the country long enough to know not to mess with the heifers whose only instinct is to protect their calves so turned immediately right to head back up to the fence, the wood and the unrelenting undergrowth. I jumped the stream onto what looked like solid ground and as I did so I found myself deep up to my thighs in mud. My immediate thought in panic was sinking mud as I had gone in so quick, so spread out my map case as a platform to help spread my weight and give me traction to pull myself out of the mud. Thankfully the heifers knew these parts and did not follow. So as I grabbed and tugged at vegetation and pushed down on my map case, I managed to get enough traction to extract myself, wobbly legged and tired, but had even managed to keep my trainers and my phone. Now I had to tackle the fence again. Once again, I was in amongst the unrelenting sticky, scratchy and trippy undergrowth so, leaping like a gazelle I was bounding through this undergrowth to bypass the heifers and reach a field margin along which I hoped to be able to run, free from the suffocating undergrowth of the untended wood. I made it to the field with legs scratched and deeply stung, lungs straining for air after all that bounding, and a little wobbly for want of some energy. The warming sun reinvigorated me well and soon I was jogging gently along the field margin next to the wood. Now aware that more than sheep are managed by the Dalmahoy estate, and wondering where the bull that sired all those calves might be, I was on red alert with the routine fine tremor of fear and neurological dysfunction rippling through my entire body. Through my mud and sweat stung eyes I could see brown 4-legged beasts of sizeable dimensions in the distance but could not make head nor tail of the type of beast in the glare of the sunshine so edged gingerly along the field margin until I could confirm that they were indeed………………………horses! I quietly rejoiced and increased in pace to the fence, only to find that the fence was in fact a high voltage electric cattle fence under which was a low lying, dark green, blanket of nettles which stretched so tantalisingly close to the ground before and beyond the fence. Looking around me for alternative options I realised that there was no choice, I had to go under it. In my skimpy running shorts and with wobbly legs, there was no way that I was going to try to vault or scissor jump it. I valued my crown jewel too greatly! So after some thought I came to realise with a wry smile that this situation was just like one of those military command tasks designed to assess, inform and train an individual’s ability to assess a situation, come up with a plan with the meagre resources available to get one’s team across that fast flowing crocodile infested river, before then putting the plan into action through sound briefing and delegation of responsibilities before co-ordination of the team at work, and all against the real pressure of time and a tut-tutting, tooth-sucking, head-shaking member of the directing staff. Only this time, there were no imaginary crocodiles or fast flowing rivers and I had passed the sinking mud challenge already this day, but, there was a broad carpet of hard stinging nettles and a moderately low-lying sizzling electric cattle fence. None of it imaginary and all of it painful. I had no planks or ropes or dampened cutting tools, just a map and a map case and a phone that conveniently, and just like the command tasks of old, had no reception. I had no team to command, just a tired and ill-disciplined and slow thinking brain at the best of times, and a trembling body that struggles at times to speak to the brain and therefore co-ordinate motor function, but the consequence of failure was not a big fat Freddy F for fail but a real stinging or sizzling shock, or both. So, plan made, I took my map out of the map case and then used the case for my hands and the map for my knees to shuffle hands first on map case before going onto tiptoe to then reach under me in a one arm press up to move the map across for my knees, then tiptoe across in a full press-up position to get my knees above and onto the map. So I started to traverse across to the electric fence. Hands, knees, hands, knees and no stings and quite sure that I was easily low enough to miss the fence. I was indeed low enough until, as I tried to bump slide my hands and map case across, a knee slipped off the map and into the nettles with the sudden stinging sensation making me flinch up and into the wire fence, sizzlesizzleThud! The fence hit me hard along the length of the muscle just to the right of my spine. It hit me hard enough to make my left arm and leg crumple and topple my entire back and legs onto the blanket of nettles, which of course stung me and the sides of my legs and arms hard as I rolled off the nettles. I did of course shout in alarm then jumped up dazed with electric shock and numb with nettle stings and expecting a seizure to hit me any time soon. There was nothing for it. After glancing at the scene of the mishap and returning to collect my map, map case and incredibly still working muddy and zapped phone, I started to walk for Dalmahoy all the time trying to sense the start of a seizure rushing in hard. But incredibly, nothing came and as the strength returned to my legs, I started to jog back. I spotted a clearing in the wood and a track that ran in the direction I wanted to go. I ran on and on looking like a character on the run in an Indiana Jones movie, except of course for the skimpy shorts straight out of a 70s American detective TV show. I was all covered in thick mud with a trickle of blood from deep scratches on my shins, my t-shirt stretched baggy and insisting on hanging off my shoulders, I jogged and tripped through this wonderful wood along cleared tracks and straight into a paintball arena. With no wars being fought this day I carried on, soaking up the wonderfully built and camouflaged paintball bases and cover positions, then on to the Dalmahoy stables and onto the tarmacked drive back up to the hotel. My 20 minute 2 miler was quite an adventure, but took me 1 hour and 10 minutes and cost me a pair of socks that would never regain their shape or be white again. I could well have written a book about this run if Michael Rosen hadn’t got there first. It had mud, deep dark mud to wade through, deep dark woods to stumble and trip through, no bears, but startled heifers, and no fast-flowing river, just a sizzling electric fence, can’t go through it: can’t go over it, I had to go under it!
The next day, in preparation for a wonderful day back at Dalmahoy to write and practice golf, I took the final plunge to reduce my anti-seizure medication to the lowest possible safe dose. I was determined to seize my life back free from the thick fog of high doses of anti-seizure medication necessary to prevent epileptic seizures, but I had managed to convince my neurologist that my seizures were no longer epileptic and just related to my neurological dysfunction. So he reluctantly agreed despite seeing a ‘whiff of epilepsy still in my seizures’, to start the reduction of my anti-epileptic seizure medication with a very detailed plan, he laid out for me very clearly, how he was going to move me across to a much gentler and much lower dose of anti-seizure medication whilst weaning me off, entirely, my original high dosage anti-seizure medication. It was a very slow and suitably cautious plan to guard against the whiffs of epilepsy becoming more than just a whiff in my seizures as one was not supposed to be able to heal the level of damage that I had in my brain. The tumour had left a big hole and the craniotomy, brain-focused radiotherapy, brain-focused chemotherapy and each and every epileptic seizure, have all left their scars that act as a conduit to and interference to the brains electrical activity. While an adult can retrain a healthy brain to an extent, an adult cannot repair scar tissue or grow new brain. Only a growing child can do that to an extent, so in theory I cannot cure myself of epilepsy. It is meant to be one of those conditions that once you have it you have it for life, and certainly that was the case with my Father whose brain was damaged by a fall as a child. Yet I was back down to the lowest possible safe dose of a much gentler anti-seizure medication and still managed to cycle the 14 miles from Newhaven to Dalmahoy along the wonderful cycle paths, then along the Union Canal, Ransfield Road and down the Dalmahoy Road to practice golf and write without a single whiff of a seizure all day, before returning along the same 14 mile route and stopping half way for a food shop on the way back. There was some neurological trembling from head to toe with the pungent whiffs and tastes akin to having swilled and swallowed some stagnant water, but none of the metallic tastes and smells and hives of aggressive bees threatening to overwhelm me that I always associated with my epileptic seizures. This was really good news.
The following day brought more challenge with even more good news. I had to endure a 16 hour dehydration test at the Western General Hospital which was the last possible test to prove or disprove the presence of at least one of the many types of diabetes. I have had every other possible test to date and this was the last test that I could take to rule out all of the possible types of diabetes as a cause of some of the symptoms I was experiencing. The test started with no fluid by mouth after 2200hrs the night before. Although I routinely stopped drinking water after 1830hrs in order to try and prevent the need to get up in the middle of the night for a pee, I would normally be able to quench thirst with a sip of water through the night, or on waking first thing in the morning and then on taking my drugs before my morning brisk walk, but on the morning of the test I was allowed to take my anti-seizure medication only with the smallest amount of water, and after the dehydrating effects of cycling 28 miles and practicing golf all day on a warm and muggy day the day before, the temptation to glug down the whole of the glass was strong, but it took a long time to secure this final test and I did not want to waste the opportunity, so instead I poured the cool thirst quenching water down the sink and after a brisk 20 minute walk settled to a reduced breakfast of a banana, apple and piece of toast with butter and marmalade. No blueberries, no raspberries or cereal with milk as that was all fluid. So it was a quick breakfast and then Allie drove me to the hospital. We were both worried about the impact of the arduous test on my chances of a seizure as well as the impact of a diagnosis of diabetes insipidus might have on our lives, so Allie packed her books and computer to work on her PhD while with me in hospital, and I also packed my computer to try to work on the book as we spent the day in hospital. 0815hrs and we were welcomed into the hospital by the delightfully cheerful and reassuring nurse Sandra. We were settled into the room, shown the television should we want it, then shown that the tap was taped up to prevent its use when the effects of dehydration start to kick in and I would do anything for a drink of water. For that very reason we were confined to the room. Well I was. Allie could roam but insisted on staying with me. The theory is, as I understand it, that while dehydration would normally reduce the quantity and increase the density of urine, if the brain damage had triggered Diabetes Insipidus then it would be drawing water from every conceivable cell as fast as possible and so the quantity of urine increases in volume and starts to contain certain tell tale compounds while the blood starts to show signs of increasing water stress on the vital organs.
So the first order of the day was a urine test which had to be conducted in the room. There was a sink with a taped up tap, a closed door and a curtain. I told nurse Sandra about the moment an electrician walked straight into my examination room in which I was lain on my back, naked from the waist down, legs akimbo, having a scrotal ultrasound in full view of the door which should have been locked. I will never forget the horrified look on the poor electrician’s face as his shocked brain struggled to take in and understand the scene laid out in front of him before bungling back out the door, after bumping into the door frame, eyes down, over a stammering apology. Sandra drew the curtain and locked the door after giving me the panic button. Allie sat to the rear behind me at the far end of the room and I was left to pee into this flat bottomed piece of treated cardboard before then giving blood for further testing. So it went on for the rest of the day with Allie and I working away until after an hour and about 10 minutes my brain said enough was enough and told me to stop working by insisting that I lay down. I came over all dizzy and a little confused as the mist drifted in blurring my vision and thought. This was not dehydration. This was neurological dysfunction and was quite normal after what used to be just 20 minutes working on a computer but I had, over time, stretched my concentration endurance out to about an hour. But if I push it too far the fine tremor drifts in with the mist and the remainder of the day is lived with a fine tremor through my body and seen through mist clouded eyes and brain. I had been sitting on a bed and couldn’t go for a walk as I would normally do to try and restore myself to some extent, so turned and lay down as Allie covered me with a blanket. I closed my eyes and drifted off to sleep as Allie stroked my head like a child and a tear trickled down my cheek. I was so frustrated by my inability to concentrate but was so very thankful for life and for Allie. Nurse Sandra was shortly back in to the room for more urine and blood and looked worried that I was in bed, but after only 15 minutes of sleep I was in slightly better shape so reassured her. And so the day went on with bloods and urine given every 90 minutes. Allie was of course allowed to drink but drank very little out of solidarity but we could eat lunch and the very mayonnaise-y egg mayonnaise with spinach, rocket and watercress on top, sandwich went down well, although at times the dry bread did need the assistance of a cherry tomato. The red grapes were also a blessed relief and one test later, we were released mid-afternoon. I had passed the test, like all the other tests which have, over time, cleared me of having developeed any form of diabetes, a disease which is routinely anticipated or maybe even expected in one form or another, after a craniotomy, brain-focused radiotherapy or such a harsh 12 months of chemotherapy. This was fantastic news and Allie and I returned home hugely relieved. Perhaps this is another example of the healing benefits of my balanced daily lifestyle.
Yet another challenging moment came in the form of yet another medical appointment. It was another clinic to give me the results of my latest quarterly scan. The scan was clear, so it was really good news, there was still no sign of the tumour. Buoyed by this most wonderful news, conversation progressed, broadened, and touched on to my wider treatment. We dealt first with the issue of the reduction in my anti-seizure medication which led into my overall strategy for healing and repairing the brain. Hopeful for the support and encouragement from my team that my healing strategies had previously engendered, I attempted to explain in more detail my strategy that would one day see me strong enough for meaningful employment, by trying to make the medically impossible possible once again, by trying to achieve the unlikely in the fields of acting, golf, music and writing, in order to raise as much money as I possibly can for those who need it most at their times of greatest need through the Disasters Emergency Committee. Finished with my proposal, enthused, exhilarated and slightly breathless once again by the excitement of this crazy but brilliant plan that rose from the ashes on first being informed that I was in unchartered waters, and unlikely to ever be fit enough for the sort of meaningful employment I aspired to, I looked to my oncologist for her moral support. Perhaps I wanted a hug and to be told that I was brilliant, that I had started to provide the final pieces that would allow for the world of clinical neurology to fill in the gaps in the puzzle of knowledge on the brain, this most complicated of organisms, that had long eluded them. Instead my oncologist told me exactly what I didn’t want to hear. She laid out precisely, in scientific terms, but most clearly and carefully in ways that I could not dispute in the face of such medical evidence borne from centuries of worldwide medical experience, exactly the reasons behind my neurologist’s previous gentle warning. That:
- You cannot cure epilepsy.
- You cannot heal the brain to such an extent as to be able to return your cognitive capacity to what it once was. That the great big hole and the scar tissue will remain and act as a conduit for electrical misfires in the brain causing seizure activity and that the human body can only heal brain damage in the very young and growing.
- At 45 your body just cannot heal the brain like a broken bone, it will not happen.
- You are unlikely to be able to return to the sort of employment you aspire to.
- Perhaps you should consider, in time, volunteering as a stepping stone to a form of employment, but be careful as these volunteer jobs in such circumstances seem to have a nasty habit of taking advantage of the volunteer.
At that very moment, I just wanted the world to swallow me up. I was tired. I had been fighting every single day for 5 whole years just to be normal and all the time there was a light at the end of the tunnel. During those 5 years there was no Rest and Recuperation (R&R), no Bank Holidays, no Holidays, just fighting each and every day. I had achieved small victories which had perhaps lured me into a false sense of security. I may well have beaten the tumour, but the collateral damage caused by the tumour treatment and epilepsy was at risk of swallowing me up. The light at the end of the tunnel had gone out and a dark cloud drifted in over me. With the wind knocked out of my body, my nose started twitching, my speech became laboured and my head span with the realisation that I was most unlikely to achieve much more than breathe and steal oxygen each and every day. Allie took me home and tried to reassure me, but as she drove, with the news I already knew reaffirmed by another respected expert, I was close, so very close, to giving up. In my minds eye, I had surrendered to the tide and was being washed out to sea, floating spread-eagled, face down in the wild and wasteful ocean, never to be recovered. I felt physically nauseous as the swell lifted me up and down while turning me over to breathe, which I did with a deep gasp before surrendering once again to the sea. So Allie drove to the sound of occasional gasps for air as I wallowed in my own self-pity. I very nearly closed down the challenge altogether to withdraw to long walks and daytime TV on the sofa, to sit and wait for Alzheimers to drift over me before switching off the lights.
Once home, Allie rallied me and reminded me of all the wonderful things that I did have, and as her words of desperate encouragement echoed in my shell-shocked mind, I woke up and realised that she was indeed completely correct. That a lot of my brain remains healthy and as I had been trying to do before I should encourage the brain to bypass the damaged third and retrain the remaining healthy two thirds of the brain to take on and strengthen those cognitive and neurological functions that had been lost or weakened. That through golf sponsored by the Dalmahoy Hotel and Country Club in Edinburgh, acting with the Acting Out Drama School in Edinburgh, and music on my keyboard at home, given to me for a song by a music shop in Stirling, and by writing like the writing of these posts, I can try to turn these wonderful kindnesses into opportunity. That if I can seize the imagination of the Golfing, Dramatic, Musical and Literary Communities, then perhaps they can help me to encourage the 65 million active current account holders to sponsor me with just £1.00 a month and give me once again a purpose in raising millions for people at their times of greatest need, at times of disaster, through the Disasters Emergency Committee.
Allie’s encouragement brought me in from the tide and I once again returned to the rhythm of a busy life learning to play Golf, Act, Make Music and Write, while spending time with friends and family. I started to grow in confidence.
The following week, Heather had finished her Higher exams so came to Edinburgh with her boyfriend Callum to celebrate with Dad. I had little money but between us we had enough to catch the train to the Deep Sea World in North Queensferry before having lunch out in a restaurant in Ocean Terminal. It was a wonderful day that sadly ended terribly. We were all 3 back in the flat with Allie, Heather and Callum were having fun playing cards, which I thoroughly enjoyed watching, and discovering a competitive streak in both Callum and Heather, but it was all in good humour. But slowly, ever so slowly I noticed the background tremor grow stronger in my whole body, face and head with small twitches appearing in my limbs. I withdrew from refereeing and moved rapidly to the keyboard to try and force the brain to find a way to function. Allie knew immediately that something was up and came to my side. She watched and listened for a while and I did indeed manage to play a very simple tune from start to finish, but by the time I had finished, my speech was very laboured and my shoulders one shoulder at a time, mainly the right, were pulling back, just a little, as if an unseen force was forcing them to contort backwards while small twitches caught my arms and legs. My face started twitching and Heather started to notice the start of this dysfunction. It was time to withdraw to bed to let the worst of this dysfunction pass over me out of the view of the children. With thickened tongue and swollen lips I answered Heather’s question, ‘Are you OK, Dad?’ ‘Ess hanku arling, urmmmm ine. Ack in a inute or shoe.’ I am quite sure that Heather was not convinced, but she had seen the start of seizures before. Only this wasn’t epileptic, it was neurological and I had no idea what was going to happen next, or even if I would manage to control my bodily functions. Allie knew as well that I should not stay so she led me, reassuring Heather that she would look after me, out to the bedroom. A hot flush rolled in so in twitchy, jerky motions and with Allie’s help I managed to get my shirt and trousers off before lying myself back onto the bed. Allie pulled the duvet over me but it stayed on me not long. The twitches began to get more violent as if invisible ropes were attached to legs and arms and some ogres and trolls were hidden out of view yanking on them hard at random intervals. Then the forcing over of my shoulders grew much stronger, much akin to a manipulation of the spine by an invisible monster of a man. I could not stop it or control it any way so l lay there jerking and twitching while my body was being twisted with such force that it started to become increasingly uncomfortable on the base of my spine with each jerking movement during the extreme twist, bringing pain shooting through my body up from my spine and exploding out of my head. I feared for how bad this was going to become but Allie stayed with me and reassured me until such time as this dysfunction started to dissipate down into the sand and back out to sea. I lay there exhausted, shivering and cold and as I started to become more aware of my surroundings I felt Allie gently stroking my head and my hair as she quietly sobbed and prayed over me. We both gently cried while I lay there and considered our future.
Two days later I arrived at my Monday evening acting class and when it was my turn to deliver my monologue from Shakespeare’s Henry V, and which I had successfully managed to learn by heart I threw every ounce of energy I had into it. As I delivered my ‘Once more into the breach dear friends’ monologue in word perfect form, up close and personal with the eye, expression and passion of a real life infantryman, I started to physically shake and as I delivered the finale of ‘on, on you noble English whose blood is fet from the Fathers of War’, I ended breathless and weak limbed from the passion of this performance as I saw such parallel between Henry V’s victory against all odds and my own attempts. The audience of the course applauded weakly and I looked to our coach Philippos, who was normally full of faint praise for my efforts, for comment. Instead he asked, ‘what has happened, Archie? You seem to lack any energy and expression’. In horror I realised that I was, as Allie had warned me, still recovering from my last seizure and what I thought I was delivering was not in fact what was being seen. That right now, every ounce of energy from me was in fact, for all those watching, little energy at all. Again my will took a battering and while I still struggle to learn the most basic of piano tunes to accompany the song all about hope from Cinderella and write this post over a two to three week period through a fog of flashing lights and gentle head aches and multi coloured spots with no peripheral vision and tremors vibrating through my body, I am reminded once again of my significant weaknesses and my treatment team’s dire warnings. But I cannot abandon all hope and give up because this will lead to my rapid demise in cognitive and motor function and I am not ready to metamorphose into a vegetable just yet. I have to keep striving and hope and pray that with God’s help I can one day overcome this significant affliction and make the impossible possible once again, and while I do I hope that you can provide me with encouragement so to do by sponsoring me for just £1.00 per month with every single penny going to the Disasters Emergency Committee.
The next couple of days were a real challenge as I tried to expel all thoughts of giving up from out of my head, but each time thought of all those in the world who were far worse than I and how giving up would set such a rotten example to the children. Besides, giving up had never been a part of my daily existence. So I continue and hope that you will sponsor me so to do and in the meantime I promise to try to do all that I can to bring you those moments of light that shine out from the darkness.
Thank you
Yours aye
Archie
Deo Juvante
I will beat this beast