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Goodbye to Doune

I am very sad to be saying goodbye to Doune. I am sad because I love the village: its community, its wonderful setting surrounded by wonderful rolling countryside and the Gargunnock hills, and the Braes of Doune with the Trossachs piercing the skyline to our North. But keeping a flat in Doune became financially untenable so I have put it on the market and hope to find a buyer who will embrace the village as I have. But it is not goodbye permanently for I have lots to keep coming back for. To see my children, to see my many friends in the village, to enjoy the many wonderful walks, and to work with Webb and Wallace accountants who have agreed to continue to provide accountancy support for the Challenge, and Key Facilities Management who have agreed to continue to host and support the website for free.

But as I pondered this post I was reminded of the true horrors of what lay ahead. Of the frailty of my recovery. When I started the Challenge I was aware that I might be charting my final days rather publicly and was prepared to do that to help improve the lives and life chances of so many more people by fundraising for 5 charities for as long as ever I could. But this morning I was reminded just what a difficult promise to keep that is. That on making the impossible possible in beating the beast of a brain tumour I have opened the door to the entirely new beast of neurological dysfunction which could lead to Alzheimers. That in successfully achieving life, I am going to have to work so jolly hard in order to actually have life. To be something other than a burden on society and most importantly, the ones I love. I have talked about this possibility before and given many examples of how the neurological dysfunction manifests itself, but this morning gave me, gave us a fright. It was a normal morning after a wonderful evening in which Allie took me to watch Bach's Christmas Oratorio. It had been a fitful night’s sleep as I thought through the writing of my book and, try as I might to flush it from my mind and concentrate on relaxation techniques to get back to sleep, I would find myself, within seconds, at another chapter of the book. I got some sleep so it was not a total disaster so I woke feeling well and went for a brisk 21 minute walk in the first grey and cold light of a beautiful bright clear skied dawn. Back home I did 1 overarm pull up, 2 press ups and sit ups before preparing breakfast and waiting for Allie to join me at the table, beautifully laid by Allie with Advent calendars to celebrate the first day of advent. Allie was in the shower so I sat at the keyboard to do 10 minutes organ practice. Yesterday, I had perfected a tune so I turned to a tune I had learned through treatment and had continued to play regularly so knew well but needing perfecting. As I started to play, my mind went blank. Suddenly there was absolutely nothing in my head. I know not how long for but I must have just sat there and looked at the music as I tried and tried to find something in my brain, just something, but all I kept finding was nothing. There was no noise, no smells, no sight, no sensations whatsoever. Just the tiny pitter patter of me scurrying around my brain, looking in every corner trying to find something, and I found nothing. Just horrible, echo-y emptiness. I must have found a switch somewhere because eventually, tired from my frantic searching, I came back. Focus returned to my eyes, so I rubbed them and attempted to play this well-known tune. Again I went completely blank. I lost all my senses again and briefly started to panic, but again, a short time later, came back. I knew that I had to try again and again and again until I got the brain to function, so with shaky hands I started to try. It was terrible and so I realised that I had to strip the tune back to its bare notes and learn it again. I did so and as I did Allie came into the kitchen and listened while she finished preparing breakfast. As she did so my brain slowly started to drag the tune out of a dusty folder somewhere but all the time I struggled to shake the fear of that emptiness, that complete removal from the world while still in the world, from my mind. I grew colder still so drew up my fleece and after further improvements decided to join Allie for breakfast. Allie was concerned and asked after my welfare that morning so I tried to explain what had happened and how it had felt. I was struggling to string words together, to communicate the true horror of what had happened in those brief moments, and the cold clammy feeling of fear that it had left me in, but Allie could see that I was distressed and tried to show understanding and pacify me with soothing words but just could not grasp the depth of my fear, of my experience, and the more she tried, the more distressed I became. I just could not get the brain to communicate properly and the words I had in my mind just would not fall out of my mouth. I became more and more frustrated with myself and my inability to communicate. I was rapidly becoming a broken and unreliable bit part to our marriage and felt that I just did not deserve Allie’s love and kindness and the more she tried to express it, the more she just did not understand. I started to wave my arms around in expressions of frustration like a gorilla in the jungle and at that point knew that I had no control of myself. I had to get away. I dropped the bowl I was holding onto the work top and ran to the bedroom. I sat on the bed and tried to breathe to calm down but instead found myself with my head in my hands sobbing. She did not deserve this. I did not deserve Allie. How long can she possibly persevere with such uncertainty and such a feeble individual as a husband? I could not provide for or protect her right now. I was sparking like a broken piece of electrical engineering and becoming increasingly unreliable and the more I tried to describe and explain neurological dysfunction and its challenges, the more people seemed to move away in order to protect themselves from this liability known as Archie. I am not a liability, I am not a danger, in fact I have always been told that I am too soft, but I am, right now, misunderstood, and with a confidence that is sapping away incident by incident. I sat and quietly sobbed. Allie crept into the bedroom and wrapped her arms around me from behind me. She laid her head on my shoulder and her cheek against my cheek on my hearing side so that I could hear her. ‘I love you Archie’, whispered Allie, ‘and I always will.’ I lifted my head from my hands, wiped my eyes, blew my nose, and gave thanks for this incredible woman who knew, just then, exactly what I needed to hear.

We went back into the kitchen to have breakfast and as I walked back into the kitchen I heard the pitter patter of me scurrying around my head again and realised that it wasn’t me, it was the metronome on the keyboard. I switched it off and returned to the table to eat breakfast with Allie who then offered thanks and prayed a beautiful prayer for me, for us. Just as she finished, her mobile pinged. She looked at it briefly, smiled and turned the phone towards me. Two words in bold capitals on the phone. ‘FEAR NOT’ It was the introduction to a devotional for the start of the Advent season and was perfectly timed and placed for us. I smiled and my thoughts turned to the end of a wonderful piece of writing I had received some time ago.

’Sometimes there is sadness in our journey, but there is also lots of beauty. We must keep putting one foot in front of the other even when we hurt, for we will never know what is waiting for us just around the bend.’

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