Surviving chronic pain


A tale of Gurus, toenails and the Ego’s revenge.

Unexpectedly, I find myself in Corfu town in late July at Rex’s, an excellent Greek restaurant behind the elegant flats built by Napoleon for his troops in 1814. These now form the charming Rue de Rivoli style city centre with their oversized hanging gas lamps. I say, unexpectedly, because I was supposed to be with some Italian friends on a boat for a few weeks cruising around the Ionian islands, as I had done before in 2016, But I had had to abandon my plans after one day due to a minor toe injury, which required that I didn’t swim for a while. So the next morning I repacked my bags and left the boat moored off a beach on the delightfully underdeveloped island of Erikoussa. and took the fast ferry back to Corfu town. Once there, I rented a studio in the old part of the city for a few days, and finding myself alone, with the beaches off limits, my thoughts turned to writing, an activity I had stopped in 2017. Consequently, I went out one morning, bought a notebook and pen, ensconced myself in one of Corfu’s many cafes in front of the park, ordered a cafe freddo and got started.

It has been exactly two years since I last posted anything on Facebook or wrote a blog. The purpose of this piece is to fill in this gaping trench of time. I now feel the urge to share my experience of this challenging period of my life for a number of reasons; firstly, it might, by reliving it on paper, reveal something of value to others who might be facing their own difficulties in living in poor health, or know someone who is. I find those periods of our lives that pass effortlessly and happily tend to be, paradoxically, rather bare and parched gardens of the soul. Other more challenging times, where our mettle as human beings is tested to breaking point and beyond, tend in contrast to be more interesting and thus worthy of exploration. Secondly, I would like to frame what appeared to me as a series of frighteningly chaotic and random experiences into an ordered universe of chronology and meaning. I find that overlaying painful memories with a meaningful narrative can alleviate the burden of suffering or at least make it more tolerable. Finally, I hope perhaps to find from the singular and unique experience of one person, something that is applicable, useful and universal.

The outer shell of this story is a tale of physical and psychological hardship arising from the emergence, in 2017, of back pain that soon became acute, chronic and all consuming, and how I struggled to cope with the challenges it presented. It is inevitable that we will experience the body in a state of distress at some point in our lives. It is how we respond to this situation, what help we receive, how useful it is and how we respond to that assistance that determines whether we survive the ordeal or in some sad cases, not. But above all I hope to demonstrate that behind the most mundane and quiet of lives spent in the centre of a big city such as London, a ferocious battle can be fought between pain on the one hand with its pull towards oblivion, and love on the other, pulling towards life; namely my love for my family, my mother and my sister, my beloved godfather Ronnie, my cousin Raymond, and all my close friends, and their love for me in supporting me in whatever way they could. Thus, at its heart this is a love story; about the importance of relationship because it is now clear to me that when all seems lost, and I really mean lost, that the underpinnings of love that link us to others in this world can be the critical medicine that keeps one alive in the face of the unlivable.

Because the events I am about to describe occurred over two years, I shall break up this story into three parts, organised as if it was a scuba dive. In fact a dive into some of the stranger and darker pools of life. The first part which I call the Descent describes how these events unfolded, the middle part which describes what life is like when one is deeply challenged in the apparently hopeless, and finally the ascent back to life as we broadly all know it. So really I am taking you on a journey and together we shall see if the following of this tale has been of some use.

I shall begin this story in a cubicle at UCL hospital in London in October 2016, when a nurse came in to explain my scan results and asked me what did I know of my condition. After explaining that I knew I had localised prostate cancer and that I suspected we might have to repeat the localised procedure I had had in 2014 to control it, she proceeded to strip me of my illusions by telling me that cancer had spread in the lymph nodes up to my lower diaphragm and that they were very sorry but all they could offer me was palliative chemotherapy. I was struck by the oddity of being given what felt at the time as a death sentence, by a registrar nurse rather than a doctor. I left the building in shock and had the difficult experience of communicating this to family and friends, hopefully a little more tactfully than I had been told. In December I went skiing with two old school chums to my favourite ski resort, thinking this might be my last ski holiday. So we went to Zermatt in Switzerland and the day after we got back I started chemotherapy, which at the time I treated as a bit of an adventure. During this period I often experienced mild euphoria or exhilaration as if something exciting and challenging was presented to me. A wise friend of mine suspected I was in a state of denial and this was my response. At no time was I depressed at my situation. On the whole I survived it psychologically pretty well, staying positive despite a tough week in hospital when the doctors placed me on the septicemia protocol, an experience I wrote about in my last blog in 2017. I also managed a couple of weekends in the Alps with the help of a couple of good friends. It was there that I learnt about the effect of altitude on someone undergoing such treatment. Namely that it is a poor combination.

Nevertheless within a week of finishing chemotherapy, I flew to Portugal in May to attend a week’s silent retreat, led by a rotund charismatic Caribbean man from Brixton who seemed able to create a very loving group experience, while teaching the principles of No-Self. The reason I attended this event, and a second longer one in August, was to try to come to terms with my fear of death, namely by exploring the question “who dies” through meditation, silence and opening the heart. I thought that if I could realize this understanding of No-Self then all fear of death would disappear, This was a wildly optimistic plan and I was soon disillusioned of this goal. However, silent retreats are by their nature, powerful, as silence is an effective state in which to sidestep and neutralize the Ego, with its many faces of self-aggrandizement. In a silent environment, where stress can no longer be released by conversing. I found at both events that my mental chatter increased heavily the first few days, with lots of critical judgements about the event and people there, but then the mind quietened down and a feeling of peace emerged, which then allowed deep feelings to surface into consciousness. These would emerge towards the end of the three hour Satsang (sittings) when beautiful live music would be played. In my case these took the form of releasing old grief, each time finding the soft melting into tears a somewhat beautiful and exquisite experience even though my mind had absolutely no idea what I was shedding tears over. With hindsight perhaps it was a heightened feeling of lovelessness in my life that contrasted with the public and evident love that was being continually expressed by participants and staff. Ultimately it was irrelevant as to why these particular feelings emerged: it was just good that sadness was released.

In the week following each retreat I stayed with my friend Carlos in Lisbon and the effects of the event continued. Sporadic tearfulness, waves of gratitude and love, swept through my consciousness, but also intense anxiety. This was new to me and I could only surmise that my sense of identity, my ego felt profoundly threatened after spending days in an environment focused only on the heart, with the Ego cast as the villain. Almost an entity that could when threatened react quite strongly in its own defence, in its existence in my own mind. The anxiety I believe came from the fear of self-annihilation. The retreat guide warned us that we could expect a strong reaction from the Ego following the “pruning”effect of the retreats.

Coming back down to earth, I developed an infection under a toenail during the first retreat and once back in Lisbon I found myself repeatedly going to hospital for treatment. Fortunately my host Carlos had a friend who was a senior doctor at one hospital so I was very well looked after. But this infection led firstly to sitting awkwardly during the last days of the retreat then also limping for some days after as I was unable to wear shoes.

The net effect of this infection, combined with lengthy periods of daily sitting during the retreat so soon after chemotherapy, led, I believe, to me developing sciatica when sitting for long periods in cars and planes during June and July, a condition that steadily worsened through the summer of 2017. It was further exacerbated by a stressful time looking after my elderly mother, and the inexperienced but overly enthusiastic hands of a local osteopath, and blossomed into the dark flower of centralised and fully fledged lower back pain by the beginning of August. And it was with this pain that I then set off to Lisbon from Marseilles for the second retreat.

This event took place over ten days at an Ashram near the Algarve and I participated with the help of their medical team by lying on the floor on my back in a tent like structure adjacent to the main hall, watching the meditations on a television, all in 40 degrees of heat. By now I was more religiously taking paracetamol and ibuprofen than seeking enlightenment. Nevertheless I remember on one occasion I was doing a standing meditation, as I now could no longer sit comfortably in a chair for more than five minutes, on a hilltop, looking over the lush but dry southern hills of Alentejo, and in the stillness I heard the sound of a dog barking and for a brief instant I had a flash of insight into what the group guide was trying to impart, namely the absence of Self at the core of our being. I noticed that there appeared to be only a string of sounds, but no listener. My personal sense of self only existed when self-referenced in mental thought. That sound was registered in my field of consciousness as if recorded on a blank tape with no personal interference. Anyway, the insight was fleeting, the sense of personhood returned almost immediately. and this experience, while profound, seemed to have no apparent consequences.

Meanwhile my back pain continued to worsen and once back in Lisbon, I started to panic at having to spend days on my back. I was staying with my friend Carlos and on the first night at his rambling family house outside Lisbon he gave a party. I remember having to leave early and retire to a room as I was unable to stay sitting for the dinner. His cousin, a doctor, soon arranged for me to have a small quantity of Tramadol, a moderately strong opioid, and Valium, and despite this aid, the pain accompanied by surges of anxiety, continued to worsen, specially when sitting. I remember one day when my host Carlos and I rushed around chemists trying to get pain injections, something that is possible in Portugal, driving around in a car in an area with a lot of painful speed bumps, and the relief when one chemist did offer this service. And it was then that I noticed an unusual phenomenon; walking into the chemist, assisted up the steps by Carlos as my legs seemed to get rigid, I could hardly walk my spine had become so stiff. But once the injection was administered I immediately walked out normally and unaided. It appeared that the pain itself was highly sensitive to my mental state. Anxiety or relaxation drove my back experience. Nevertheless I remained convinced that my distress had a physical cause and for six days in a row I had these painkilling injections in the buttocks. I was very concerned as to how I was going to get back home to London. I called my GP in the UK for help but she could not offer any assistance. Two friends offered to fly out to accompany me back which was very kind, but I decided I could do it with the right medication, and I was convinced that doctors in London could give me a diagnosis and would be able to assist me. So after the last injection and with 10 gr of Valium I got myself back to London. My sister organised for me to see a pain consultant within a few days, but my hopes were soon dashed. After an examination he could find nothing obviously wrong. And that was the pattern with ever more intrusive examinations, scans, x-rays, MRIs, in the months that followed.

As August turned to September I saw a number of pain consultants, some suggested I saw a psychologist but I believed that exercise could rebuild me and free me so I started working with a physiotherapist in Notting Hill Gate. By early October I had reached the limit of over the counter painkillers with their mild codeine content, and on 10th of October, a day seared in my memory, I panicked at the level of pain that overwhelmed me one morning and rushed to see my GP who sent me straight to hospital for an X-ray. Again my body became strangely rigid with fear and distress. Ironically, it was in A&E that I had my worst peak experience. Kept waiting in the hospital corridor, I was able to lie down on a metal bench, but weeks of worsening pain finally boiled over into total panic, a feeling that I was drowning in pain. I had no control as to when I was going to see a doctor and that feeling of powerlessness which I had first experienced prior to getting those injections in Lisbon, intensified, and I started to pace the corridor, my back mirroring my increasing distress. I began to beg passing nurses and doctors for help, but they just told me to wait. I remember thinking about running head first into the wall to knock myself out, and wondered if not seen soon, whether I would end up running into the traffic outside in the hope of finding a suitable bus or lorry speed to end my turmoil. Finally, and it was only an hour, I saw a doctor and immediately my pain began to abate in his calm presence. After discussions over the telephone with my GP, I was prescribed Tramadol again, and Oramorph, morphine in liquid form for pain peaks. As at the Portuguese chemist, I left the building calm and almost pain free, my anxiety having drained away. It was as if my mind was driving my pain experiences, yet I could not accept such an idea, pain without physical cause. Nor did I make any connection with the retreat that I had completed only a few weeks earlier.

In constant pain, unable to sit for long, the days turned to weeks and then to months. The initial panic at finding myself unable to live doing all the things I used to, subsided first into determination and then gradually into despair. By the end of the year I was finding it increasingly difficult to lie on my back on a bed and the New Year saw me turn to my sides for the ever-reducing orbits of comfort. Travel around London became challenging and I frequently needed to take a Valium just to do the 50 minute journey to stay with my sister. Often the anxiety of travel meant I was coping with near peak pain capacity, with the ever-present fear that I might become distressed and then cause unwanted attention on public transport. I frequently took refuge at my sister’s flat in North London at weekends, as I found her company comforting. For six months I would go there with the bottle of Oramorph in my bag just in case, though I never used it there. John, my sister’s partner, generously shared his time with my sister with me and while I tried to give them as much space as possible, it was always a tension for my sister to split herself between her partner and me. At my sister’s flat I would rest, listening to the calm and soothing voice of Evoria Cesare as she sang her Capo Verde songs. I took solace in the ordered universes of popular culture, namely Thursday evenings watching Death in Paradise whose identical structure each week I found comforting, as I did with watching Columbo on Sunday afternoons. Both shows dealt with death but in a gentle and tidy way and the villains generally went quietly when identified which met my need for world without cruelty or evident violence.

My daily routine began to revolve around the 4 to 6 hour opioid cycle of medication and woe betide me should I have had the temerity to forget a dose. In fact, I never did in the two years that followed. The pain would leave me alone at night, but each day by the time I reached the shower my new companion was calling attention to itself, and thus hour by hour there was a battle between the pain and me. The former demanded recognition and attention, feeding off the latter to grow in intensity until mitigated but never silenced by medication, on the one hand, and on the other I attempted to function as normally as possible. That meant seeing my physio twice a week, other doctor and healer appointments of one kind or other in the week, shopping in supermarkets but getting the food delivered, and getting to the pool and back safely in the evenings. Gradually I noticed patterns emerging. Stress worsened the condition, as did queuing in any context, such as supermarkets. If I could distract myself pain lessened. If I was in conversation with someone I noticed less pain. So this unwanted guest in my life became first my torturer, and finally my teacher. It was as if I had a small demanding anxious child within who threw tantrums of pain that laid me low if I did not respond quickly to its needs. Daily fear of flare up accompanied me throughout the day. Any change of routine such as an invitation to dinner, or a visit to a gallery was fraught with danger and I soon learnt to decline such possibilities. And thus, in only a few months, my life shrunk into a very small anxiety-afilled world where the daily minute by minute obsession was a constant self-referral into physical pain sensations. All the lofty spirituality had dissolved into a cramped and desperate existence, a descent into a pressured and claustrophobic darkness.

To be continued in part 2.