PART 3 – THE ASCENT
A tale of acceptance, burst bubbles, and friendship.
This is the final portrait in this triptych of living with chronic pain. In the first part, I explored the undergrowth of 2017 to find the pathway to the house of chronic pain, and in the second, I sought to give a fuller picture of the unique challenges that chronic pain presents to oneself and others. Now it is time to return to the sunlight of the soul. Because, unlike many chronic pain accounts, this one has reached a happier place.
Throughout this story I have used diving metaphors, the descent, the seabed, and now the ascent. The reason for this is simple, on reflection I see many similarities to scuba diving. Taken as a whole, the experience with chronic pain reminds me of my diving days, when I lived in Asia. And particularly one dive I did off Singapore on hot and humid Saturday in 1981: I was with two students and an instructor and we had dived between two small islands, a few miles south of the city and as we descended in a controlled manner in near zero visibility, releasing air from our buoyancy jackets and allowing our weight belts to take us down, one of our party signalled she was having difficulty clearing her ears. We looked to the instructor who indicated we should ascend. As I started to gently kick towards the dim surface light above, I noticed the water getting darker and darker, I checked my depth gauge and watched in amazement as we descended steadily from 7 to around 28 metres. We stayed close together and after some time feeling the pull of the current sweep us along the seabed, we eventually re-emerged some 400 meters from the dive boat, whose crew soon started to look for us, but in the wrong direction, as we were swept out from between the two small islands and into the shipping lanes. After two somewhat anxious hours bobbing in the waves we were rescued by a couple of cheerful Australians on a Hoby Cat.
So, I see the parallels with my own recent experience; First, the feeling of being dragged down into a frightening darkness of uncertainty in the first six months, then, once stabilized medically in January 2018, I seemed to drift in endless daily repetition, along the bottom throughout last year, when finally I gave up all attempts to find a diagnosis and a cure. Once I accepted this state of affairs, paradoxically, that was a turning point and the slow ascent could begin to where I am now, mostly pain free and spending the summer in the South of France.
But let’s pick up where we left off. Back in the middle of last year; It is now a year since I developed this crippling back and backside pain I had given up all the activities I used to enjoy that required sitting; dinner parties, restaurants, cinemas, and importantly, travel. I had a special cushion allowed me to sit to eat a meal at home, but without it a park bench would stop me after three minutes or so. My daily routine was built around not exceeding four hours of being vertical, with bed or floor rest late mornings, long afternoons, followed by relaxation at my local pool and a quiet dinner at home. And whenever possible, weekends at my sister’s to recharge and lift my spirits in her quiet and confident presence I saw friends, of course, but in the initial stages it was limited to either a walk and a quick coffee, or to a visit at my home where the bed in my sitting room allowed me to enjoy a friend’s company at home. Initially some friends had difficulty coming to terms with my new situation. I remember one asking me on a walk in Holland Park, what would I do if I didn’t get better, the answer was a fairly obvious one. On another occasion, another, seeing my physical distress as I ate a meal with her at the bar counter of the Ivy – it was only my second outing to a restaurant in a year – said she would not put up with it and would head off to Dignitas in Switzerland, which rather took me aback, as despite having such thoughts, I had no intention of going to that country for anything other than skiing.
During this first year, my week revolved around my two appointments with my physiotherapist up in Notting Hill. She was young, with very talented hands adept at finding and releasing muscular tension. The stress of having chronic pain alone, meant that these visits were really useful. Above all she has the Irish gift of endless positivity and I would drink from this positive well. But the ease with which I left each time, only lasted a few hours and the darker, fearful, and painful patterns soon reasserted themselves in my consciousness. Nevertheless, she was a vital and steady torch bearer, in leading me going forward, and for 18 months I would do her exercises religiously even if they did not improve the condition. The fact that she could make me feel better, for just a few hours, gave me a flicker of hope.
Looking back on last year, and extending the diving metaphor, there was no obvious tipping point where buoyancy overcame the weight belt nexus of anxiety, pain and depression pulling me down I mentioned earlier that starting antidepressants to restore sleep and appetite was a key decision in late January 2018 as it stopped the cycle of decline. Meanwhile, I continued striving for a diagnosis and spent a small fortune seeing two of London’s most eminent back surgeons. It was after the second set of the most comprehensive scan investigations at the Wellington Hospital in June last year, when the surgeon could find no explanation for the severity of my pain and simply referred me to a psychologist, that I finally gave up looking for a structural physical cause., I surrendered to my situation. I say surrender because the process of accepting the “what is” of life is an immense struggle for one’s Ego and it’s not easy to let go, as the thinking mind always seeks to maximize control of its environment. In any case to live each day without knowing why one is suffering is unbearably hard to accept, and only after a whole year of determination to find a diagnosis did this process of surrender reach fruition. Acceptance sounds such an innocuous word, but it is the end point of a bitter inner struggle. It is the point when all other options of the mind have been exhausted and the individual Will folds. Acceptance is therefore a process of being surrendered to Life. And all the psychic energy expended in seeking a way out, to be somehow fixed externally by doctors, could now be released back into the flow of life. This meant that I accepted the pain as part of me, like being forced to adopt an angry, anxious child.
Over the coming months, I lived each day as Ground-hog day. Pain and I were now in a relationship, and this was one that had to be managed. Firstly, I learnt to talk to it, telling it to relax when it got noisy and demanding I say noisy because I learnt to change my language around pain; for instance painful with its associated mental stressors, became noisy, or uncomfortable, easier conditions for an anxious mind to deal with. Secondly, I learnt to modify the amount of time and the frequency with which I lay horizontal in the recovery position to maximise the time I could stay upright. Then by learning how to distract myself with music or film as opposed to stewing in a soup of negativity. Reading was problematic when lying down, so I avoided it. I was also introduced to the concept of “Graded Exposure”. That is to say, that rather than focus on avoiding pain I was to expose myself deliberately to it while undertaking simple normal activities, such as sitting or carrying items. In other words to befriend it somehow, to get to know its contours, and not let it crimp my life so much.
Meanwhile my sister introduced me to the innovative work of an American pain consultant in the San Franscico Bay area, Dr Michael Moskowitz, who had written a brilliant on how the brain can heal a range of conditions including chronic pain, using a concept called Neuroplasticity. The key idea is that the brain is infinitely plastic in the sense that life experiences mould the brain. So with this particular disorder, pain and attention to pain, builds ever faster and wider pain pathways in the brain as it gradually colonizes it, And that is why, left untreated, chronic pain is a progressive disease. Conversily, establishing competing patterns to pain builds alternative pathways, which in turn reduces the strength of the pain impulses. Examples of the successful application of neuroplasticity are listening to music, eating chocolate and other tasty foods, and stroking a smooth or furry object repeatedly while focussing on the sensation. Of course, well people are moulding their brains positively all their lives as they work, love and play, but chronic pain sufferers have to work relentlessly and consciously against pain every day to have any hope of a normal life.
Scanning the body for sensations other than pain, was another powerful tool, a form of mindfulness meditation where you breath imaginatively into every part of your body from the toes to the top of your head. Done properly it can take at least twenty minutes and gives the brain’s attention something else to feed on, by exploring parts of the body which are pain free. Basically anything that distracted the brain, essentially stopped the manufacture of ever stronger pain pathways.
So my life activities became my therapy, the battleground to be fought in my invaded brain which mechanistically was turning out endless pain signals, what doctors, pain centralisation. That is a diagnosis you really don’t want to hear, because by then, the pain is no longer related to any physical part of the body but is, as it says on the tin, made in the brain, so my activities became purposeful and tactical, and together with my sister, we had a plan, even if I remained deeply sceptical.’Thus, daily life became a battle to be fought in the brain, between the pain and everything else. This was a battle fought, moment by moment, hour by hour, day by day, for months. I learnt to focus on using the body’s senses to drown out the pain signalling and over time to desensitize the brain and nervous system. I learnt to do this all while doing everything else that we all do; go shopping, walk in the park, chat with friends. The only exception was work, and I was too depressed to have any interest in my two desk bound activities, trading and writing, both of which required sitting or standing. Whenever pain tried to pull me away into itself, I said ok but let’s do this as well, whatever “this” was. I now, also received help from other quarters.
Throughout last year, I had monthly meetings with the Pain Team, a hard boiled psychologist and a diffident physiotherapist at my local hospital, and it was they who introduced me to the importance of language to de-dramatise, to reduce the emotional impact of my experience, and they both encouraged me to reduce what they called my anxiety-based, safety seeking behaviours and re-engage with targeted activities on which I had to report on at the next meeting. Initially, they chided me for the way I took two chairs in the lecture room and put them together with a small gap between them so I could sit down comfortably to listen to their initial lecture. They had never seen someone do this before. Often in their meetings, I stood throughout as I had become chair adverse, and with good reason, as the pain could emerge fiercer a few hours later if I over-sat. I was encouraged to engage in activities that had nothing to do with pain management, and to reduce those that related to it, such as seeing alternative doctors and healers.. Instead, I went to some painting classes but each time the fact that they lasted three hours and were relatively far away from home made it problematic. It was also the same when I tried to join a choir, it involved too much sitting, so I had to learn to do what I could in the circumstances. I started to reduce the time I spent lying down, went for more walks, started online dating with a view to meeting one woman a week for a one hour coffee and chat. which I did a few times. My special cushion which accompanied me everywhere tended to make a somewhat negative impression, especially with women looking for a travel partner. But it did not matter, the meetings were all about building confidence and doing normal things. Because I needed to build my confidence and thus reduce my fear and stress of normal activities. Unexpected pain flare-ups were essentially very frightening and it took me a long time to normalise my response to them.
By the autumn of last year, I was keen to start the Pain team’s 12 week gym rehabilitation programme, and so it was with bitter disappointment that they felt in October that it was too soon to start and I remember going back to my flat so disappointed I cried bitter tears, not helped by what I felt was their tough, seemingly uncompassionate view of my use of the Tens machine, and cushion to sit on. Nevertheless I felt I was ready for some gentle weight training, and the following month I was duly enrolled. Initially, I was extremely nervous of each machine and training with a room full of people with the similar condition was disconcerting, and I feared a flare-up afterwards. These did duly follow the day after, what was relatively mild exercise and so I would rest most of the day. The most painful machine was the leg press which I did on huge cushion. The idea was to work through and wit,h the strong pain the exercise triggered on the coccyx, It taught me over time, to be less afraid of pain, it passes. Gradually my body grew used to being used again. I started to carry light shopping back from the supermarket, as opposed to having it all delivered. Each step was a reclaim of territory back from pain’s domain, a bursting of a fear bubble that had imprisoned me in my own consciousness, and a step up towards the natural light of life.
People with chronic pain with a sitting disability like mine, are unrecognised by wider society,- not even hospital waiting rooms for patients with back problems, have facilities for such people. and I usually ended up on the floor on such occasions to the embarrassment of the nurses. Thus my two hour waits to see my oncologist every three months involved both additional stress from waiting, a key pain trigger, and nowhere to lie down in the hospital department. So I would often appear in the meeting, distressed and tearful by the long delays, until finally we decided to have telephone interviews instead. These experiences are in contrast to the legislation for wheelchair access that have transformed mobility of the disabled.
Social activities outside the house that required sitting, were therefore very problematic in the beginning. The pathway of recovery to normal socialised functioning outside of the safety of my home, can best be compared with a metaphor of a building with many floors and steps to be covered between each floor, as we ascend to the sunny roof terrace. The first floor might be a walk and a three minute cushionless sit down on a park bench with a friend. the second floor could be the coffee meetings in a cafe, with graded exposure to ever longer periods of sitting in some discomfort, then restaurants, 3nd floor, cinemas 4rd floor and so on up into the floors of trains, buses and planes, to reach the top floor. So to sit with this graded exposure was to accept tolerable pain levels and required sitting progressing from a few minutes to twenty, forty, and so on throughout last year.. if I look at the top of building the highest floor, for me, would be to accept the invitation to visit my friend Richard and his wife Charade in Hawaii, a journey totalling 20 hours with a change in Los Angeles. To understand the climb between these metaphoric floors, let’s climb together through a couple of mundane activities, restaurants and cinemas.
Getting back to eating out was a big morale booster. As soon as I could sit comfortably for 15 minutes in a coffee shop I was keen to try eating out. With the exception of a family Christmas lunch in 2017 where I was lying down on a bench, I had not been to a restaurant for almost a year, when I booked to have lunch with my cousin Raymond, a relaxed and tolerant person, at the Ivy, the only place locally that had an eating bar. As usual I suffered all the pre-event anxieties, which I masked behind a welcoming smile. Between courses I walked about or leant standing against the bar, only sitting for the time it took me to eat what was on my plate. On subsequent occasions, I moved up to a table reservation and arranged to have a relaxed dinner with an old friend, Rupert. I remember how he would sportingly join me for walks around the block, as we waited for each course, having explained to the waiters that we were not absconding. Later, I learnt to walk less between courses and to stay sitting throughout the meal. I was also helped by having a very effective sitting cushion which I always took everywhere with me. The same process was followed when I went for dinners with friends at their home, and gradually my social life came back to life, but each step was a step through fear, a step of courage. After so many flare-ups and tears, any re-engagement required me to dig deep within my resources . As someone who has done so many dangerous sports in my youth, I was used to risk, but each of these utterly mundane activities was hidden in a thicket of intense fears of what might happen, but rarely did, and if they did materialise, i.e. a flare-up, I increasingly found I had the means to overcome them.
The various steps with restaurant experiences was replicated with the next staircase up, a trip to the cinema which pose a higher challenge than restaurants, patrons are not supposed to walk about. Cinema normalisation was particularly important to me as I had loved films, and I used the film duration as a template for travel sitting. First a visit on my own, early afternoon, where the near emptiness of the hall allowed me to walk about at the back, or lie down for a section, unpressurised by the needs of a companion. I learnt, depending on the quality of the film, that I could forget my limitations and lose myself in the story. I would come out of the cinema and for a few blessed minutes feel as I used to, free from any health anxieties, before the old defensive consciousness of dread, pain and fear would reassert itself. But in time I learnt to sit for longer and longer, until with a friend, I could enjoy the whole film while sitting, albeit on my cushion. Graduation from this level was with my friend Christine, when we went to see Mission Impossible the Fallout, a particularly engrossing film, two hours long, without leaving the seat, and I emerged into the sunlight of that afternoon saying Paris was now a definite possibility. But it was not all plain sailing. Of course there were setbacks, but each time, instructive. On one occasion, I joined four friends going to the cinema after dinner. The cinema was full, I sat on the aisle, but the film dragged and soon I was no longer lost in the film, but increasingly stressed by the inability to move around without disturbing the other patrons, so the old pattern reasserted itself, with self- referring into my lower back which duly came to life with a vengeance and soon I was on the floor by the door, I had to abort and told my concerned friends I was off home, back to the safety blanket of bed. Yet these setbacks grew more infrequent throughout the year. Nevertheless this entire process of pain exposure was undertaken while on moderately high levels of morphine and so it was a delicate balance to flirt with uncapped pain levels while most of the discomfort was pain controlled. One has much better feedback when not on any painkillers, and can adjust one’s behaviour accordingly. The problem with opioids is that they mask errors. The normal pain feedback loop is broken. It is therefore easier to injure yourself without knowing necessarily.
So as the Christmas of 2018 came around again, and my dear mother once more flew over from France to be with my sister and me, I found myself,unexpectedly, in a better space than the tear-filled Christmas before. I. could finally measure myself against the memories of a year earlier. Then my cousin Raymond had visited and going out to a lunch in a restaurant literally required my sister to bring the bedding with us so I could lie down by the table. A year later, the three of us celebrated Christmas in the same restaurant, but this time I managed to sit for almost two hours albeit on that cushion and brief forays out between courses. I also noticed that rather than lie on the bed to watch television I found myself sitting more often and for longer on a sofa.
In reflecting on the past year, I could see that I had substantially reclaimed most of my previous activities undertaken in London. I was no longer taking a Valium to travel on the Underground, and I was doing the various outings with pain rather than being stopped by pain. I was learning to be less afraid of it, and I was learning the important distinction between pain and suffering, the later being the psychological distress response to pain which acts as such a pain multiplier. So I entered the New year with a determination to apply the same fear busting template I had grown to know, to travel beyond London, with the ultimate aim of reaching the South of France with my sister to visit my mother in the Summer for a couple of weeks.
I should also mention that, in addition to the NHS team, I felt I wanted more support than just one hour a month, so I found a psychologist to see privately on a weekly basis, to turbocharge the process from the second half of the year, and we worked together for about a year. She was a young Indian woman, very professional and positive, and who worked in pain management for the National Health Service. Our early sessions were often conducted on the floor with her joining me on the carpet, but gradually we progressed to chairs with less time standing in the session. Our last few sessions were conducted without safety seeking tools such as the Tens machine or cushion. From her, I learnt a number of visualization techniques for relaxation, which would later come in very useful when it came to face the unique challenges of travel. She gave me a bottle of rosewater to smell as an alternative to pain sensing, and above all it was her who encouraged me to make the big leap and join my friends in the Alps last Easter over my sister’s reticence as to the wisdom of such a journey. That decision turned out to be a major step on the road to recovery.
Returning to the diving metaphor, one critical tool to improve “buoyancy” was learning and refining yogic breathing techniques, preferably in combination with meditation, but useful at any point of the day. Back in 2009 I had attended a free dive course in Thailand, and there was introduced to Prayanama yogic practices useful if you were to reach a depth of 20 metres. For instance, by varying the tempo of the in-breath versus the out-breath, one can manipulate the parasympathetic nervous system to achieve relaxation, and thus pain reduction. I would focus on a number of counts of breathing interspersed with breath holds on the in and the out. Thus, it became possible to breath at a rate of two breaths per minute. Of all the methods I learnt to control anxiety, and therefore, pain, breathing, combined with visualisation and meditation, was the most important and invaluable. And could be used in any place and anytime, on a train, bus, at a party, anywhere, so I really worked hard to break the constant vigilance that my mind was focussed on throughout the day, like a jumpy sentry skirting the edge of my consciousness looking for the earliest hint of a pain attack. I had to disconnect this impulse by overlaying a distracting thought such as focusing on my breath for that instant. This process went on countless times a day over these months and gradually the hyper vigilance subsided.
My friends were invaluable in reconnecting me to life, often without conscious intent, there was a good result. One invited me to her cocktail party last January where I found the company so interesting that I ended up standing almost the whole four hours. Conversation with friends was an excellent distraction as the complexity of social interactions crowded out self referencing. Brexit particularly, was the most effective subject in distracting me, and I would engage happily with anyone for as long as possible. I had two good women friends who for months, would join me for dinner in my flat on an almost weekly basis, and I always knew that for that evening, I would get some good pain respite through the animated conversations that followed and they didn’t mind if I had to lay in the recovery position, while waiting for the evening opioid dose to kick in. I remain for ever grateful to these friends for being so consistently supportive these two years.
I mentioned earlier that one friend, Julian, had invited me out to join him and his family at his chalet in the French Alps. Initially, I turned him down immediately, knowing that the journey would have to be by train and it involved up to 5 hours of train travel and that was after reaching Paris. But I was determined to break out of London and I was fortunate to have many friends living in Europe and I was keen to reconnect with them. If need be, I would learn to travel with pain as my companion but travel I would. Like so often, I started with my sister. We travelled by train, with my mother, to visit my cousin Raymond in Oxfordshire after Christmas, and the travel was a do-able one hour. And of course it all went smoothly and that fear bubble burst; I could travel out of London and the world didn’t fall in. After that, it was a more ambitious three hour train trip with my sister to Malvern, to stay with her partner John, who was working there. I will describe this first journey in some detail to show how chronic pain works. We set off from my sister’s flat and by the time I was on the Underground, I was fully under attack from pain-anxiety. How was I going to manage three hours of sitting on a train I was thinking? Facing each other on the Underground I started meditating, focussing on the breath and once on the train, in our seats at Paddington, the terror and its pain had lifted like a curtain. With frequent trips to the bar carriage, and the help of a good film that we watched together on my Ipad, we reached our destination without incident. The choice of film was critical in the strategy of distraction, just as if I was travelling with a small child, we needed to avoid a tantrum.
Thus started a pattern of ever more challenging travelling. So when it came to going abroad to the Alps, I thought this would be too difficult, particularly on my own, but my psychologist thought I was ready and so I changed my mind. A very good friend accompanied me at 6.00 in the morning to Euston and, equipped with films and TV shows on my Ipad, and all my pain management paraphernalia I set off for Paris. I used all the skills I had acquired, engaged the conductor in a lengthy conversation, walked the length of the train to alternate with sitting, and did long body scan meditations, combined with visualisation techniques, Soon I was celebrating my arrival in Paris with a large steak and a beer on a restaurant terrace, Berthillon, on the Ile Saint Louis. I felt like a man let out of prison. I sat in the little garden at the end of the island, meditated and allowed the euphoria to sweep over me. It was a private moment of absolute triumph. I was finally out of the UK and back in the city of my childhood.
The following morning, after another severe anxiety/pain attack at a coffee shop at the Gare de Lyon, at the prospect of a no turning back commitment to a 5 hour journey deep into France, that left me seriously thinking about going back to the safety of my bed in London, I boarded the train to Bourges Saint-Maurice. Initially I planned to break up the journey into two parts, and had made a hotel reservation at an earlier stop, but as things settled down, I decided to stay on to my destination. Again I worked all the methods and used all the tools that I had learnt to keep things under control, so I would not have to leave the train prematurely. I spent most of the journey in the restaurant car and would engage fellow travellers in conversation to distract myself. Once I arrived I checked in to a local hotel. With a feeling of joy at being in sight of my beloved snowy mountains, I made a visit to the town church, where I got on my knees, unusually for me, prayed, and felt intense gratitude to Life in getting me to the Alps safely. The following morning I was picked up by my friend Julian, and driven the half hour to his chalet where I spent a delightful week going for short walks at altitude. My hosts were very accommodating in allowing me to join them lying down on the sofa when necessary in the evenings. My hostess had had painful back experiences too, so she was particularly understanding. However when staying with other people one is not in one’s home environment and so less in control, and this sense fed into my lower back throughout the week so by the time I left, Julian drove me to the station with me propped up on pillows lying on my side on the back seat. The return journey was thus more challenging, and the last hour on the train into Paris, found me on my side across two seats, headphones on, listening to Evoria Cesare and methodically stroking and feeling the fabric of the seat, as I battled to distract myself. So I was very relieved to reach my hotel by the Gare de Lyon . With strikes delaying trains back to London, I decided to spend another day in Paris, resting up and watching the sad burning of Notre Dame. The following morning, still in flare-up from the previous day of travelling with a suitcase, I allowed myself the rare luxury of being fully pain free on the Eurostar back to London, by taking the equivalent dose of 6mg of morphine per hour and a Valium, which was the level always available to me, but which I used only in emergencies or critical events such as my Godfather’s funeral. I was always afraid of opioid tolerance and the chemical anxiety that flows from regular use of Benzo’s such as Valium.
I learnt some useful lessons from my first independent travel. Firstly, not to take a two wheeled suitcase through the Paris underground. it’s too hard on a sensitized lower back. I suspect a four wheeled one is better. And don’t arrive at a hotel in France in the morning and expect to gain access to the room before 2.00pm. I got caught out, and needing somewhere to lie down urgently, near Gare du Nord in Paris, took a second bedroom in an adjacent hotel for the hour I needed to lie down. Fortunately I was able to get a refund for the second hotel room, but when travelling with this condition, one needs to respond immediately, if circumstances start to overwhelm one’s defences, and thus take defensive action, such as finding a quiet place to recentre one’ self.
After that testing week, which was as much a journey through the mind as a physical journey , my one remaining goal was to visit my mother in France, where she now stayed at a recuperation home after a bad fall. I had a whole life there in Cavaliere, where we had a home since 1965 and I had spent almost every summer there since I was nine years old, and so have many friends who I had not seen for two years. Again I turned to my sister, and together we planned an early flight to Marseille, followed by bus and train to Toulon. A long and complicated journey at the best of times. Flights are the chronic pain sufferers’ biggest challenge as there is no option to lie down on a full flight and the sufferer’s worst nightmare is to be caught on board sitting and delayed. With pain medicines filling half my suitcase, we set off at three in the morning, and this time, to my astonishment, the anxiety attacks did not materialise, despite being delayed an hour on the plane. The previous trips to Malvern and Paris had normalised my experience. I managed the almost 12 hour journey by walking about as much as possible on the flight with repeated visits to the wash-room to wash my hands to feel the sensation of water across my fingers, the airport bus, by lying on the back row, and the train by lying on the sofa style seats in the upstairs compartment. All the time using my mental toolkit tactically in response to pain as it ebbed and flowed with the stressful thoughts arising from the long journey, as it unfolded.
Therefore, it was a dream come true, finally, to enter the room where my mother was waiting in Hyeres, and give her the biggest hug. For the last two years she had travelled to England in her mid 90’s by wheelchair to see her son, and I, thanks to my sister Celia, and many friends, had managed to seemingly miraculously travel to France.
I say, miraculously, because from mid May onwards, the intensity of pain experienced each day, began to diminish as opposed to be managed. Soon a day came when I said to my sister that I had felt no pain till 4 o’clock in the afternoon. Then other days came which were busy and full, and pain was somewhere in the backdrop rather than the foreground. This trend has continued steadily to the point, where I sit in my bedroom in my mother’s villa in France, typing for a couple of hours; where the day starts with up to an hour of snorkelling, followed by short bike rides, languid breakfasts on the beach, relaxed lunches and dinners, all without the special cushion. The Tens machine has been put away, and my medicine plans are all about reduction. Trips to the local town or further away to St Tropez are also mostly pain free. I decided that I was well enough to handle the stress of looking after my mother with the support team she has and so decided not to return to London with my sister but to spend the whole summer in Cavaliere.
I mentioned snorkelling as a major part of my day, and it is an important part of my recovery to a healthier relationship to the body. I finally achieved a long cherished goal of swimming in the warm and crystal clear waters out to the rocky point of the Cap Nègre last week, an hour’s swim. Today I swam past the house of the diminutive Monsieur Sarkozy and his wife Carla, and round the bay to the next beach, a lonely and somewhat daunting journey of 80 minutes paddling past the cliffs, where so many American Rangers died climbing them under machine-gun fire in 1944, when this part of the coast was liberated. A long swim, and I found as I stared through my mask into the deep blues of the seabed fifty feet below me, that it held many echoes of the longer “swim”I am describing in these pages. I mention these swimming exploits, because for at least fifteen years, my swimming here was reduced to just paddling in the water to cool off by the water’s edge. Now I am enjoying anew, a body that can move in the water without discomfort. This renaissance is taking me in new directions.
This experience of living without constant pain is a completely new situation, and a strange one. I almost expect things to return to how they were, but as the days pass, life continues to normalise and almost a whole day can go by without thinking about pain, I am indeed like the prisoner who has been recently released, but at any moment expects the van to arrive on the doorstep for a return to the shadows, to the invisible war that was fought, initially without hope, and then with growing confidence in some kind of accommodation, a life to be shared with pain. I never thought that pain would actually move out, change premises, go and torture someone else. And yet as I survey the detritus of his long stay, the electrodes, batteries and piles of silver foiled pills, it is becoming harder to remember the contours of its face and the terror it instilled in me.
So what has changed? Well, certainly all the buoyancy steps I mentioned have a cumulatively positive effect. Psychologically inspired techniques such as CBT (Cognitive Behavioural Therapy) with its graded exposure concept to desensitise a traumatised nervous system. The mindfulness techniques and the panoply of other tools were not in themselves sufficient to achieve such a shift. But they helped one to cope with pain better, to offer some sense of control. No, something else has happened, and I don’t think it’s just that two years have passed since the chemotherapy and my body has somehow recovered from its effects, since chronic pain is not one of them. No, I suspect something else: It is possible, even likely, that a significant change in my cancer suppression treatment has played a role. Since late 2016, I have been having three monthly injections of Zoladex, a testosterone suppressant injected into the stomach. My oncologist, whose regular mantra was cancer is the least of my problems, finally took me off this medication that is used to control prostrate cancer, on the basis that it might be the cause of all this pain and it was worth the risk, since I was in remission, to see if she could improve my quality of life. I. suspect that the dramatic reduction in inflammatory response in the lower back and seat since I ceased having these injections, is due to this decision. If true, then this whole two year experience has been down to a rare but not so uncommon allergic response to a medication. and therefore potentially avoidable.
I may,however, be caught in a catch 22; Control the cancer but live with pain, or be free of pain but risk an end to my remission. Perhaps this narrative will be like the Morse code signalling of a lamp at night, emitted by a submarine that has surfaced to communicate with the outside world, only to sink back below the grey rolling waves of the North Atlantic, into the depths and the silence. But perhaps that is too bleak a vision of the future. We shall soon find out in the months ahead. In the meantime, I shall make the absolute best of everyday that life gives me pain and cancer free.
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As I stated in the beginning, I hoped to gain some insight from putting this account to paper. and perhaps share some lessons from these two years. I remember a good friend of mine invited me a few months ago to listen to a lecture on the corporate lessons to be drawn from the experiences of three extreme adventurers, who had done solo trips to the Pole or long desert crossings I replied that I had no desire to attend such an event as I had all the extreme challenges I could hope for here in Kensington, in living an ordinary life, I had no need to haul a sledge over the ice fields to learn about endurance and survival. So what might be some lessons from my journey round the dark side of my mind?
The first one must be to follow Winston Churchill’s dictum “if you are going through Hell, keep going”. Sometimes life seems too hard to continue with no dawn in sight. And yet there isn’t any choice but to continue living when you seriously consider the alternatives. And one must not forget that the idea that peace will follow the last breath is only an assumption, not a fact, for who knows what is beyond the veil? Perhaps the inner tensions that drive people over the edge,and the ripples of harm to others carry on with the soul’s journey. No one knows. At least with a body and consciousness there is the possibility of evolutionary change.
The second point I would like to highlight is the importance of accepting help and love from those closest to one. Sharing the darkness lessens the isolation and loneliness of the journey. I was fortunate to have an older sister who was a trained psychotherapist and with whom we had a strong bond going all the way back to childhood. As a family we are a tightly knit and these bonds came to the fore as time passed. It was the love I had for my family and them for me, that carried me over the darkest of days. I remember one moment in December 2017, when I was staying at my sister’s, in great pain, I called out to her “save me, save me!” as I lay on the floor bewildered by the intensity of my suffering. She calmly stayed by my side, with her hand on my chest till the paroxysm passed. My sister’s actions during these difficult months was truly selfless. she gave endlessly of her time and attention to my needs, weekend after weekend, sacrificing outings, again and again to be with me. Thus it is how we make our mark on the world, not as self obsessives, but by creating; by our works in the wider sense of the word, by our actions.
I also had the good fortune to have a Godfather who fully embodied the role. Once it was no longer feasible to travel to meet him at his club, despite being 99, he would meet me locally in a cafe for a chat and later for lunches. On two occasions he travelled up from Kent to see us at Christmas, at my sister’s flat, a six hour taxi journey on the last occasion which I now understand was a farewell visit to my mother. Sadly he has died now, but his dedication to us as a family and to me will never be forgotten. In the end he taught us that everything really boils down to relationship. I know its trite to say it, but it really is true.
The third point I wish to emphasise is the importance of a deep acceptance of the “what is”of life. This does not mean that one stops fighting for change, but that the acceptance of the disorder, in my case, allowed it to change. In a way, it is the tension filled rejection of the condition that keeps it fixed and unchanging; all my energies and treasure expended to find a cure, changed nothing. However once I accepted it into my life, I could proceed to do activities around it and with it. And by living with it, it has quietly sunk into the background.
Turning to a sense of appreciation, I am indeed grateful to the medical team at the Chelsea and Westminster Hospital, who first stabilized me with a suitable cocktail of drugs, and then pushed me to renew a healthier relationship to my body, and life more widely. While anti depressants, nerve agents like Pregabalin, and opioids are not so gentle on the body, these drugs really can make a difference. In addition, the bureaucracy that is the National Health Service worked in my favour, as it kept me on their books and working with them through many months to the point of completion. Working with the private sector, while more immediate in seeing experts quickly, was vulnerable to my whims in trying different methods and people, so I never really followed through with anything. Also there was always the suspicion that more venal motives were at work in the doctors’ advice, which was not the case with the NHS efforts to help me.
I chose to begin this story with a bleak cancer diagnosis in a hospital cubicle, but now I think it should really begin with the spiritual experience I had on that hilltop in Alentejo, in Portugal, in early August two years ago. I said earlier that it appeared to be so fleeting as to be of little consequence. I believe that is wrong. The radical implications of that moment, of glimpsing the Infinite, uncapped an extraordinary effusion of anxiety in the months that followed. I had already undertaken a first silent retreat only three months beforehand and already, after that event, I had experienced mild anxiety for no apparent reason in the week that followed. And that was in addition to the psychic burden of a cancer diagnosis six months before.
Chronic pain is chronic because it is anxiety that locks it in place. and what is anxiety other than free floating fear, somatised in the body, experienced in consciousness and dissipated by awareness I learnt to see, by the timings of its emergence and dissipation throughout the day, that it was almost like I had a small fearful child needing constant attention and it communicated through my central nervous system with pain signals. I had set off to Portugal in search of Enlightenment in the vain hope of finding peace before I lost my body to cancer. Instead of inner peace and a heart full of love, I returned with the Ego’s revenge in my pocket, a distressed inner child tapping on my back, which was to become the anvil of my soul. Anvil because I learnt in these two years of battering, more about my self than at any other time in my life.
In telling this story I set out three clear goals; that it might help others trapped in similar circumstances, to overlay meaning over apparently meaningless suffering through narration, and to find something universal to all of us from the particular. I shall leave it to you whether two of those goals were met, but the issue of meaning is personal to me. At a practical level, I could say that meaning came from being enrolled in a two year pain management course, where I learnt a useful set of skills to manage pain, anxiety and other negative emotional states from trained pain psychologists. These are tools for life. But the deeper causes were never addressed. From where did all this anxiety spring from? From the sense that my body was under threat of both imminent torture (pain) and eventual death (cancer) certainly. My body is the foundation stone of my sense of self. In fact my deepest belief as an individual is that this body which I use to swim this morning and type these words is my core self. Hence my fear of annihilation, when I think about cancer or am told by a spiritual teacher that my self, my thought self, is just an illusion, So it is not “ I think therefore I exist” but “I fear therefore I exist”.
One of the characteristics of my fear filled auto-imprisonment was that it was always built on the thought of what might happen in the future, once I left the safety of my flat; not on the magic present moment of sensed experience. To escape this miasma, I had to be encouraged to reconnect with normal activities travel etc., and to face each time a bubble of anxiety which could only burst, once engaged by awareness in that activity. I suspect the Ego, the small personal self, exists also as one fat bubble of thought, terrified it too will be popped, and I like to imagine for us all, that the curtain will be lifted one day, and the clear light of seeing the spiritual reality behind this theatre we call life, will transform our world and its manifest problems, which I see as spiritual problems of identity. But that is a subject for another day.
Instead, let’s return to these two silent retreats. I mentioned that they were very loving experiences, probably the most loving I have ever witnessed. One of the facets of love is it tends to bring up to the surface, into awareness, all that is not love, namely all the old buried unaccepted emotions. Why? because in the world of egolessness, Love seeks only to know itself, that is its pleasure. And that heart-centred love, is hidden from our daily experience because it is buried under unprocessed emotions deep in psyche and somatised in our body. So before enlightenment, the laundry must be washed first. It is only now, that I remember a conversation I had, on the second retreat, with the guide in the main hall, after he found out that I had missed eight of the ten days attendance, lying on a mattress on a floor next door, and he had arranged for his staff to drive through the night to a warehouse where he had stored a reclining chair and had it brought for me. After being invited to speak, I was given the microphone and I shared about my hilltop experience, but I also shared, with the pin silent room of four hundred participants, how much I yearned from the bottom of my heart, to come home, to my spiritual home, while I am still alive, and to which I have been given such tantalising glimpses of its existence in the course of my life.
As I survey these 700 days that have passed since these events, I am reminded of how I travelled through that arid plain of pain by looking forward to reaching the next oasis, which was my weekend stays with my sister, Celia. One of the things we particularly liked to share, was the silence of our meditations which even the neighbour’s cat seemed to enjoy as it curled up under the chair. A quiet half hour would reset us for the evening ahead. As I lay on my side, unable to do the meditation sitting up, the bric-a-brac of my anxious mind would fall away in the presence of silence. and sometimes I opened my eyes, and I would see the curved neck, falling hair, and face in quiet repose of my sister, who was doing so much for me, and I would feel such love and gratitude to her for her presence by my side.
I need to be constantly reminded that the silence is not just something to be bought on a retreat in Portugal, but envelops everything, everywhere in its quiet embrace, and is accessible at any time. All it takes to raise the curtain, is a quietening of the mind, a suspension of thinking, and its presence in the heart is revealed in all its splendour, the sun behind the clouds. For two years, in my struggles, I forgot this, but it is good to remember that it is always here and always shining, How could it not be; It is who we are. It is us.