Over the last couple of months my daughter, Heather, now 18 has conducted herself in a manner about which she can be proud, and in a manner that has inspired me to persevere, to keep fighting. Heather had, in September moved into halls at Strathclyde University to start her course in Psychology, Social Policy and Italian. As nearly every new student does, she struggled with the sudden jump up from Highers to University level education, but more worryingly she found herself in conflict with two flatmates from which there appeared to be no resolution. For the sake of her wellbeing and education, we jointly took the decision to move her as quickly as possible. My amazing and forever resourceful wife Allie got on the case to find a suitable flat, away from the halls, in Glasgow. I was in Glasgow to check them out while Allie arranged viewings and talked me on to them. We found the perfect flat that was to be available from December 20th with a young early 20s female Architecture student who was keen for a flat mate who wanted to work, help look after her big soft fluffy dog, share the chores around the flat and take the odd day out together. Sadly the male tenant who had said he was going stayed, but we were determined that this flat was for Heather, so Heather continued with her sofa surfing and somehow kept up with her studies, and amazingly kept her scores for her tests and coursework in the high 70s. Heather had climbed a mountain of hurdles in her first semester, so when we arrived at the new flat to move her in earlier this week it was my turn to climb a mountain. Heather and Allie had lots to do to reorganise the room and once we had manhandled the bed, wardrobe and chest of drawers to the correct position, they did not need my input, they needed Heather’s stuff. I carried 18 armloads of stuff up 3 floors surmounting 54 floors, 997.92 feet in the process, the equivalent of a small mountain, while the girls unpacked and organised. I then built the flat-packed bookshelf with drawers that we had bought from B&Q to give Heather more storage space. With Heather settling in, exhausted and ready for bed, we travelled home to Edinburgh. I felt the physical load on my body that day but most importantly I reflected on what I had witnessed through Heather over the last few months. The previous Sunday I had prepared and delivered the intercessions in church in which the focus was about being ready for God to ‘undo’ and then restore you. Heather had been well and truly ‘undone’, but she kept her head when all around were losing theirs and blaming it on her. She trusted herself when they doubted her and made allowance for their doubting too, and Heather proved that one of the most beautiful things that an individual can do is to forgive the wrongs of another. Heather reminded me that all good things come to those that wait and that sometimes a problem can be viewed as an opportunity. I pray that Heather is blessed with good health, happiness and continuing success in her studies from her new flat. She certainly deserves it.
On another note, over the last couple of weeks I have started to experience regular auras that wash over me quite suddenly, consuming all my senses like a wave of the sea, before seeping away from me like water through the sand. Each aura comes with a musty taste and smell, and feels a little like the early stages of an anxiety and panic attack hitting at once, coupled with a sense of foreboding, dread and significant and wicked deja vu. These auras never develop into anxiety or panic attacks and flow away easily as I breathe them out, leaving me a little shaken but not too much. They feel a little like the early stages of some of my early epileptic auras although they come with none of the horrible vibrations or metallic tastes or smells of my previous epileptic experiences. I can sense no specific trigger for these auras but they come at some point nearly every day and on occasions twice or more a day. Clearly my concern is that this is epilepsy starting to return though I can see no reason why it should be. My last scan remained clear with the exception of the regrowth of the Cholesteatoma. If it is not epilepsy what therefore might it be? I suspect that it is connected to my Neurological Dysfunction, but it is a worrying new trend.
On top of all that I have just been informed by Veterans UK, who are the body who award and manage my War Disablement Pension, that if I take on any form of work, even unpaid, that I would lose my Unemployability Supplement which amounts to 1/3 of my War Disablement Pension. Clearly I cannot afford this and on exploring this further, I discovered that there is an allowance called the Therapeutic Earnings Allowance, which allows for an individual to take on some limited work, earning up to as much as £6,838 per annum, but only if the work was agreed by their medical advisers to be therapeutic for them. This would require me to complete a form with further information about the job, prior to starting such work, in order for my request to be assessed by the Veterans UK medical branch as to whether they felt it would be therapeutic for me, with my accepted condition, to do the work.
This is I think entirely fair in the normal run of things however, as you know, I am exploring the possibility of a career in acting which is far from routine. So far I have completed 73 job applications for unpaid, low paid, no budget, student acting jobs in order to start to build some audio visual evidence for a showreel with which I can go to look for a serious agent. These 73 applications have secured me one job in an unpaid student feature film as the General. In order to succeed in establishing a career as an actor in film, I need to be able to respond to job adverts and offers quickly and with confidence. Veterans UK routinely take 2 to 3 months and on occasions significantly longer to reply and give answers to any queries that I have so far sent to them. The completion of their long and complex forms requiring significant levels of detail is often overwhelming for me, rendering me largely non-effective for the remainder of a day. Even the writing of this post is proving significantly taxing, has taken 2 days spread over 45 minute chunks with 15 minute walking breaks in between, just to enable my brain to complete this in a manner that makes sense and that will allow me to be productive for the remainder of each day. Therefore I am writing a letter to Veterans UK in which I am requesting a standing blanket agreement from them, that I may continue to seek and accept work as an actor whether unpaid, low paid or paid without the need to complete a form for each and every job application, for as long as I remain within the annual earnings threshold of £6838 per annum, in order to give me a chance of establishing myself in a new career as an employed actor, and be able to stop the unemployability supplement. Without this letter of agreement from Veterans UK, I am effectively trapped in a benefits trap as I cannot afford to lose 1/3 of my War Disablement Pension and neither do I have the Neurological/Cognitive capacity for constant form-filling then tracking of responses against each job application for each and every possible acting job.
As you know, my treatment team are firmly of the view that statistically I am far more likely to succumb to my brain tumour than establish myself in a new career as an actor. When you look at the facts in the cold light of day, I think that statistically they are of course absolutely correct. However I am determined to prove them wrong and continue to follow my balanced daily lifestyle, designed with the help of the excellent NHS dietician after I had made so many mistakes driven by Dr Google, to make sure that the tumour does not return. I am becoming increasingly aware that I will probably never be neurologically/cognitively safe enough to get my driving licence, safety boat licence and gun licence back, or be safe to use power tools or knives commercially. I still occasionally become overwhelmed in supermarkets when trying to shop, having had to be rescued by Allie a couple of times, and still struggle to concentrate on anything at my desk for any longer than 45 minutes without overwhelming my remaining fit brain, and gradually losing sight first, then speech, then hearing, then balance, then motor function and coordination. So my options for employment look dim.
I turned to acting lessons as a way of getting stronger after realising that this former Army Officer, who had, prior to the brain damage done by the tumour, the treatment and each and every one of the more severe epileptic seizures , been able to stand in front of 800 men from a Brigade and give them a two week cadre on counter insurgency operations having just returned from operations himself, could no longer walk into a room of more than half a dozen people without overwhelming myself and losing sight, speech, hearing, balance and motor function coordination to the point of becoming a miserable blob in the corner.
I had been trying and continue to use the mediums of Golf, music, dance, navigating over the hills, writing and juggling as vehicles on which to try to retrain and strengthen the brain for future employment, but it was the demands of drama that have shown the most remarkable returns in strengthening my brain. I was informed a long time ago that, because of all the brain damage, I am now at the top of the risk spectrum for Alzheimer’s and that I should do all that I can to prevent becoming demented. Walking and talking, line-learning and delivering them in a convincing and compelling way, along with having to deal with, and work with, lively fast moving and gregarious people in the actors and production team on set, is clearly therapeutic and provides me the best hope of finding an income stream in a form of employment, so that I might break out of the benefits trap I find myself in with the War Disablement Pension.
If you feel able, please pray that Veterans UK accept my letter and grant my plea for a blanket agreement from them that I may continue to seek and accept work as an actor whether unpaid, low paid or paid, without the need to complete a form for each and every job application, for as long as I remain within the annual therapeutic earnings threshold of £6838 per annum. I seek after all to be in a position when I can stop the Unemployability Supplement completely. Please also pray that these auras I am suffering from are cast from my mind never to return, that they are not the harbinger of bad news.
I now make an appeal for help. Those that attended my wedding to Allie will know very well that while I apparently I have a nice tone to my voice, I do not know how to use it. Heather has tried to teach me to sing, perhaps for the sake of her own ears, but I really need some help. I would love to be able to learn to play the piano, which I can do to a reasonable standard, and sing. Singing would be the next stage in my musical and brain development. Sadly, I cannot financially stretch to music lessons so am hoping that there might be a singing teacher out there in the central Scotland area, who would like to give me a singing lesson or two to help me in the right direction. If you could and would like to, please email me on archie@beatthebeastchallenge.co.uk Thank you.
One of the things I have learned to do when everything is going horribly wrong is to look for positive signs. Signs of hope and encouragement, for things that make me smile, for smiles. So it is a delight to be able to inform you that while in Boots the Chemist with my tabard on, a gentleman I had never met before came right up to me as I bought some vocal zone throat pastels and thrust £5 into my hand for the Disasters Emergency Committee while wishing me luck, and in so doing bringing the shop assistant at the till to smiley happy tears. This donation took me over the £8,000 raised for the DEC threshold and that made me smile. Then next door in Sainsbury’s while doing the food shop, a lady, on seeing my tabard, came up to me and said, “Hello Archie, I’ve heard of you, tell me about your challenge” before taking a card and promising that I would hear from her again. Later on a 4.75 mile run I was stopped in my tracks by a smile to discover that it belonged to Bridget from Dorset who went to my old school, King’s School in Bruton, Somerset, before then, at the very end bumping into Morag’s smile from Edinburgh.
I am reminded that while there are occasionally really good days when I can. There are frequently days in which I struggle, really struggle. But there are never days when I say I can’t.
Please challenge me to keep fighting with your sponsorship for the Disasters Emergency Committee for just £1 per month
www.beatthebeastchallenge.co.uk/sponsor-archie
Thank you
Yours aye
Archie