Surviving Adversity: Change, Acceptance & Surrender

Tottering uncertainly into the dim light of 2021, slowly emerging from the long dark tunnel that was 2020, an unbelievable realisation slowly dawns on me: if I make it to July, I will have lived 50 years on this planet – that’s 46 to 48 more than my parents were warned to expect for either one of their sons (born with the rare primary immune disease CGD). Scoot forward to 2018 and a similar message was dispensed by my wonderful specialist medical consultants who told me to “manage my expectations”, reminding me that any one of the four serious health concerns we were dealing with could at any time make me lose my footing and drop like a stone from the precipitous rock face that is my life. Throughout this last year, for someone with severe lung disease, the threat of Covid-19 has all too often meant the rock face itself is falling away beneath my feet and I am paralysed suddenly by the lack of a safety net far below.

Such a conscious awareness of mortality has not been part of my general survival strategy. Blatant denial has featured rather more heavily – for better or worse. Covid-19 did absolutely nothing to increase my belief in the chances of making the big 5-0. Plus, I would caution that there are still six months to go, so I am not counting any chickens… Still, with vaccination in the offing, it is looking more optimistic for July 2021 – and beyond!

The Showstopping Crisis of Covid

Even without Covid-19, this past year has been tough on a number of health fronts and the mental health challenges caused by the existential threat and fear of the virus have hardly made coping with the challenges of life-limiting disease any easier. In fact, I would say the combined forces of physical isolation, an end to all travel and live music, a severely curtailed social engagement plan, deteriorating lungs and a growling, chronic pelvic sepsis pretty much brought this little warhorse to his knees. But, DAMN IT, I have never been one just to give in and (as I said in my very first blogpost) this is MY show and it isn’t over yet. Whilst I am grateful it isn’t over yet, I have had some cause for alarm lately that the final curtain may be descending more quickly than anticipated – I am writing this as I emerge from quite a serious respiratory crisis (not Covid related) that has been building slowly since August 2020 and reached its zenith right around Christmas and New Year.

I am no stranger to crises (although admittedly those which involve oxygen starvation and rocketing carbon dioxide levels do add extra drama) but I have been to the brink before and it doesn’t feel like completely unfamiliar territory. I have been lucky so far in that my body has been able to go along with my wilful determination to keep moving forwards. Forwards to 30… Then forwards to 40…. Ten years ago I assured people I wouldn’t make 50, but here we are six months away….

Resilient and vulnerable

I have previously written about some of the ways I cope with the extent of my illness – the physical and mental trauma that comes in its wake – but I am now not even sure I really understand how I survived such adversity with the extraordinary set of complex physical illnesses that affect me. As a child, my doctors said they thought my blood contained some “magic factor” – as an adult, they refer to me as Lazarus. Whatever it is, there can be no doubt about my resilience and strong instinct to survive – testament perhaps to a particularly strong “life force” instilled by my lived experiences? Yet in this year of Covid, I am classed as “clinically extremely vulnerable.”

Who me??? Extremely vulnerable? I have always gone to extreme lengths to make sure I stick two fingers up at the notion of “vulnerability” – I never accepted being “different” and hated the limitations placed upon me by my genetic (or any other) disease. Sure, I have lost count of the number of life-threatening lung, liver and lymph node infections not to mention huge life-changing bowel surgeries, ongoing pelvic sepsis and a small hole in my undercarriage – but “vulnerable”?!

This obsessive “I will not succumb”, devil-may-care attitude drove me perhaps to over-extend myself as if to prove a point – I travelled to the most exotic places and threw myself into everything with even greater gusto, striking fear into the hearts of those who love me most, yet commanding the respect and amazement of others. Ultimately everyone had to accept and understand it as my survival strategy.

Survival Strategies Evolve

Underlying this strategy though was an unerring belief and faith that I would be ok. I developed what I refer to as a sort of “superman syndrome” – I had such faith that I would survive any onslaught or consequences, almost as if I were protected by divine intervention, that even in the darkest hours of illness in hospital I believed, no I knew that somehow I would be ok. In my early adult life until I turned 40, spells of illness were severe but occasional, with no ongoing disability. Then with the onset of severe bowel inflammation leading to six major abdominal surgeries, life changed for me. Now, with severe lung disease thrown into the equation, I am very limited in what my body allows me to do. Yet I refuse to give in and allow my illnesses to prevent me following my heart’s desire and, in the midst of lockdown year, driven by a longing for more light, space and air, I sold my home of 24 years and moved out of zone 2 in central London to the edge of the North Downs. “You just never give up or let your body get the better of you – I really admire that about you” said my Stepmum in astonishment. Or, as a good friend and fellow lung disease sufferer put it more bluntly, “You’re as tough as old boots!”

Such confidence, from the people I love, of my ability to resist even the most grave afflictions is truly valuable yet, I definitely have had to alter my modus operandi and accept an increasingly reduced agenda to accommodate my ailing lungs (its better than “failing” – no?) The “spirit” or “life force” remains as strong but my body can no longer carry out the demands I used to place on it. My body was crying out for me to rest (if only I could hear it) and find different survival strategies, now that I was becoming more fragile and not so invincible. I needed to find different, more sedate ways to “suck all the marrow out of life.” The focus has become less about the energy-consuming battle against the foe of my diseased body but more about the energy-saving, gentle acceptance, self-compassion and deep appreciation of my body, not to mention my mind.

2020 – Reflecting and Surrendering

The experience of 2020 has played a huge role in understanding what living with and surviving the onset of serious illness means. As the year progressed, I have seen many familiar emotions and reactions reflected in the faces and behaviour of others as we have grappled with the scourge of Covid-19: confusion, denial, protest, rebellion, anger and frustration on the one hand and an eerie, mild passivity, quiet fear, shock and acquiescence on the other. It has helped me understand the extent to which I have always protected myself from the harsh realities of my own disease by pushing the boundaries and rejecting the limitations it imposed.

For me, Buddhist psychology is yielding a huge amount of relief from suffering and helped me with the ongoing grief that has marked so much of my lived experience. It is full of teachings like acceptance, inner peace and gratitude and has really helped me come to terms with my “new normal”. The need to “surrender” is a concept which seemed intolerable to me at first because I misunderstood it. I was unclear of the boundary between surrender and resignation. Yet, surrender is in no way equal to giving up. Far from it in fact – surrendering means yielding and softening to the reality of the present moment, relaxing back and letting in a greater awareness of beauty and joy so that “this precious human life” remains one which is worth living.

The thing is, illness and death (or the threat of it) and its potential consequences creates confusion, uncertainty, pain and suffering for us all. The reality we once knew is changed forever – all changed, changed utterly. Perhaps we are all changed more deeply than we thought. We can grieve the loss of the old, but must surrender to the new reality. Perhaps a terrible beauty is born.

“The oak fought the wind and was broken. The willow bent when it must and survived” Robert Jordan