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

It seems we are living through a massive crisis which will change us forever. It has hit quickly. Suddenly, we are being addressed by our leaders in tones reminiscent of wartime. Our elderly and vulnerable are most at risk: some of us will become sick ourselves (perhaps very sick), lose loved ones, bury colleagues. The hugely painful life lessons that come to all of us eventually – illness, disease, isolation, death, grief – seem to be loudly knocking at the door. Too soon, we are being forced to open up to brutal realities that most of us find extremely challenging and painful. And worse, we are now being told how to act and how to behave. We have to self-isolate (if you are like me and one of those who are most at risk due to chronic illness or age). We have to stop doing the things we love (attending sporting events, going to theatres or cinemas and eating in restaurants) and soon all of us will be forced to stay away from our fellow human beings as universal “social distancing” measures become mandatory.

Clearly, Covid-19 may be mild for most people but this is to forget the wider implications of spreading the disease and the knock-on effects on many people who will not be fine (perhaps elderly parents or grandparents). People like me with lung disease for whom the virus would almost certainly be catastrophic, will stand no chance in any triage process for the few ICU beds available (as the experience in Italy already shows) and the weakest and eldest (and probably also the poorest) will be left to die at home or in corridors.

How do we respond to a threat like this?

Whether or not we actually face losing someone we love or we just have to change our own behaviour, our nervous systems will react and mount a defence, just as it is biologically programmed to do, in its primary objective to keep us safe. However, sometimes it doesn’t appear that way to others. We will react both emotionally and physically. Anger, fear, resentment and denial – these are all reactions that are all already visible not just in my own circle but in the world around me. We are all primed with this ancient fight/flight/freeze survival response and it affects no two people the same way.

Some people will feel physically sick or weak and obsess about the virus whilst others will go into denial or try and minimise it by making (erroneous) comparisons to seasonal flu, somehow thinking this is all about others and not about them. Others genuinely will not care, rationalising that we all have to die sometime anyway. Panic buying of loo paper, a rush on hand sanitisers and other goods, being dismissive or hurling accusations of fear mongering – all responses to the stimulus of fear, all of us trying to survive in the best way we can. Psychosomatic reactions are inevitable as people unused to illness will be hypervigilant and become convinced they are about to die. What is needed at these frightening times is a huge soothing dose of tolerance, understanding, kindness and compassion.

How did I, as someone with chronic disease, weigh up the risk?

As someone with multiple “co-morbidities” including lung disease, this crisis has hit me very hard. I quickly had to pass through all the emotional stages of sudden change or grief – denial, anger and bargaining – to reach an acceptance of the reality to avoid putting myself at huge risk. I rapidly had to weigh up that risk and, as someone who had a career in risk management within the adventure travel industry, I knew how to approach it. It is a surprisingly simple formula at its most basic level: you balance probability against the consequences.

When I first self-isolated, the probability of being infected was “unlikely” (it is now, only 10 days later, probably “might” or “expected” on the vertical axis in the matrix). Due to my lung disease, the impact of any kind of Covid-19 would be catastrophic. In all likelihood, I could not survive for long with the further damage this (or any serious) infection would cause to my lungs.

So, I had no choice – and even less now. I had to keep the probability low. Since then, I have been self-isolating, despite a strong inner resistance. I knew a protracted lack of connecting to others would be potentially very distressing. In spite of these contrary drives, however, my cognitive, rational mind knew self-isolation was the only decision I could make if self-preservation was my primary objective. I cancelled all further engagements, voluntary work, course workshops, massage clients, theatre and opera (all now cancelled anyway) – all deeply social activities which are integral tools in my box of sanity.

So how do I feel about the idea of isolation?  

Personally, for me there are certain triggers that have historically guaranteed to provoke me and bring on bouts of defensive aggression and swearing: any thoughts of isolation and almost all advice about how I should best protect my health, remembering of course that all through my childhood, infection control was a huge issue due to my immune disease. My mother was often contorted with worry and, following doctors’ advice, kept me away from other kids for long periods of time. I was not only extremely “bonny” as a child but also very determined and headstrong, just like my mum! We fought often, and she spent many a night manically scrubbing the house from top to bottom. Whilst the voracity and frequency of these isolation measures reduced in time, constant worry about bacteria, health and hygiene have pursued me my entire life. Rebellion and resistance are all very common for people born into this kind of atmosphere and who have genetic, life-limiting disease. We react against the smothering, over-protective nature of our loved ones and much to their distress, it is not unusual to go into heavy denial for long periods of time – often years or decades – and often with detrimental consequences in an effort to take control of body, mind, spirit –  and destiny.

How does isolation feel to me now, aged 48?

Eleven days into it and my body is giving my cognitive, rational mind hell. Even under “normal” circumstances, I constantly feel like I have flu anyway and moving around is tough, requiring a lot of mental and physical effort. I had often thought about whether I was biting off more than I could chew with the activities I undertake but knew I had to keep moving around physically for fear of seizing or giving up, both physically and mentally. I go out of the house to temper my physical symptoms and reach out to groups of people to temper my mental ones. I am a tactile person also and, as a biodynamic massage therapist, I use attuned touch to help people reduce their stress and heal their bodies. In a world where touch is becoming taboo, the last thing we all needed was something else to increase the physical barriers between each other. Being forced into isolation in this way for the first time since I had my bone marrow transplant 46 years ago, has started to make me very agitated and anxious as once again, I can only wave at people through windows – it is just that now they are electronic ones!

All this has worsened existing physical symptoms and created others as my anxiety and frustration increases, especially as the government advice escalates and the TV and radio blurt out warnings of worsening contagion, the virus descending upon us like a biblical plague.

An uncomfortable paradox

Reflecting on this, I can see that spiking anxiety is playing havoc with my mind and body due to various fears around entrapment, isolation and ultimately of course, death. These are all symptoms of the trauma in my past. So, what then is considered effective in combatting strong fear, anxiety and a sense of isolation which can be so physical in nature? There are many things but one of the most effective is connection with others and social engagement!* We can calm our physiological responses and begin to feel safe by connecting and engaging with trusted others, as we respond favourably to their faces and their energy. So, we find ourselves in a double bind – in a sort of odd catch 22. We experience fear and anxiety but to reduce it, we need to engage with others socially the very thing we are being asked to avoid.

What can we do to cope?

The challenge for us in these times of isolation is to try and stay connected to people as much as we can in any way we can, whilst reducing our physical contact with people temporarily. For me and for anyone with a chronic disease, it means almost total isolation until the peak of the contagion has passed but for many, it means sticking to the rules about symptoms rigidly and reducing contact to those most near and most dear. Online groups, phoning or skyping and community-based projects supporting the most lonely and the most vulnerable – these are all ways we can get through this situation. Also important is that we try to help each other understand our fears, feelings and reactions and to try to help each other to talk about them. This may be against what we British do in terms of that stiff upper lip, yet vocalising what you are feeling causes chemical changes in the brain which are proven to reduce the intensity of fear and anxiety.

As my favourite (well, the only one I know!) interpersonal neurobiologist and psychiatrist, Dr Dan Siegel says in this short clip, “you gotta name it, to tame it!”

It is vital at these times, when we feel resistant to changing our lifestyle to remember that this is all temporary but essential. The social distancing measures announced too late by this government are designed to avoid hospitals being overwhelmed (as they have elsewhere), leading to people dying unnecessarily in corridors from lack of treatment. If being at home and reducing social contact becomes too much for you, perhaps try and find ways to engage your mind and body. Going outside (at a safe distance from people) is for me, imperative and I can be seen on my mobility scooter circling a park near you, taking in the birds, trees and the onset of Spring!

I do feel frightened and frustrated – like a caged tiger. It’s all very well for me to sit here and write this but I assure you I am speaking from personal experience when it comes to the fear and overwhelming anxiety this epidemic brings with it. I am not alone, as friends tell me they have hot flushes, go hot and cold as their chest seizes up – all symptoms of that same response we all have to any threat. Yet, I feel better equipped to cope with this current situation due to my understanding of all the weird bodily sensations, pain and physical manifestations of anxiety that I am experiencing and I use strategies to help temper them. You need to know your enemy and what is most effective for you. I am spending a good part of each day stretching, meditating and calming mind and body using Eastern practices such as yoga and Qi Qong. Anything which helps to coordinate the breath with gentle movements of the body is good for slowing the frenzy of our busy minds and getting the nervous system back into “rest and digest” as opposed to “fight/flight/freeze.” Others need to blow off steam with strenuous activity – this is fine but take care to also slow down too. There are plenty of beginners’ routines to choose from and I have included a few of my own personal favourites below.  Furthermore, I am thinking about all the various books and reading I need to catch up on – not to mention of course, all the writing I want to do. I need five more lifetimes to accomplish everything I would like to, let alone five months of isolation. (OMG, I feel stressed again now!)

I have had to develop these strategies for myself to survive what has happened to me in the last 10 years so in some ways, this is now time to lean-in more to those disciplines. They are all easy and toxin-free measures that can help and improve your physical and mental symptoms. Most importantly though, as trite as it may sound, it seems important to me to maintain a high level of kindness and compassion – finding forgiveness for myself and others. It feels important to be gentle towards people (and animals) as an expression of caring more for others, the world and myself. I hope I see the other side of this debacle as I am not ready yet to leave this life – in some ways, I feel I am just finding who I really am – there is more work to do.

* Thanks to the ground breaking work of Dr Stephen Porges and the development of polyvagal theory, we understand more about the role of social engagement in helping survivors of trauma cope with their symptoms. The theory describes how visceral (bodily) experiences affect the nervous system and our resulting behaviour.  

A Grief Suppressed

I don’t know how long my dad and I sat there in that room. Neither do I know what was more shocking for me at the time – the news of my Mum’s death or the howling cries I heard coming from my dad as he convulsed with all the pain of his grief, slumped sideways on the narrow single bed he had occupied for the last two weeks in the Mother’s Unit. I have a vague memory of sinking into a heap on the floor as we entered a time warp of shocked despair and visceral sobbing. Some minutes later, even an hour perhaps, Dad was able to pull himself together and find his glasses. Gathering ourselves sufficiently, we went back down to face my grim hospital cubicle.

Scattered moments from that day have since stuck in my mind, wedged in my consciousness by the brutal force of emotion. Nanny and grandpa arrived later. I leapt onto the lap of my mum’s mum, beloved as she was to me, burying my head in her shoulder, quite unable to look up and see anyone else. I remember saying, “What are we going to do now, Nanny?” She sobbed quietly, sniffling and whimpering now and again, numb with shock and disbelief. “She looked so beautiful and peaceful” was all she could say, over and again, as if she had glimpsed an angel. In her unpublished book about my mother called The Rainbow Through The Rain, she wrote:

My husband and I entered the sterile white room at The Westminster Hospital, where they had fought so hard to save her, and glimpsed eternity on the face of our daughter. The lines of worry and strain that had made her look older than her thirty-three years had vanished. Her skin was unscarred as it had been when she was a child. She looked so young and possessed of the peace that had eluded her in life. I believed then as I kissed her still warm skin, that she had found that After Life and was reunited with her little son, Andrew. The contented little half-smile that hovered on her lips was reassuring. “Oh how beautiful and happy she looks” I whispered to the kind Hospital Chaplain standing beside me. “I couldn’t wish her back to all her troubles.” “You will” he said gently and of course, he was right.  This was a moment frozen, suspended in time – but for the living, time moves on and brings its delayed agony.

All day we sat in the sweltering little cubicle. Visitors, still oblivious to the news, arrived to what must have seemed like the aftermath of a chemical attack, all of us unspeaking, sniveling, sobbing. Globules of condensation started to form on the walls in sympathetic resonance with our tears, falling steadily to the floor. I remember peering out in search of a nurse and spotted the kind swan-like figure of Sister Cook – the lead nurse on the ward who over the years had become close to my mother. She was on the phone and had dropped to one knee as if in agony, one hand clutching her forehead, the other pressing the handset tightly to her ear. The news was clearly spreading as the day progressed.

“What are we going to do now, Daddy?” read the front-page headlines.

The media had pounced all over it. The tragic death of my mum had plunged our family once more into the goldfish bowl of public scrutiny. Our pain and suffering were on show for the entire world, including that she had died of a drug overdose taken in a moment of uncontrolled despair. That night, my grandmother wrote, the evening news led with:

Elisabeth Bostic, mother of Simon the first patient to receive a successful bone-marrow transplant from an unrelated donor, has died from a drug overdose in the Intensive Care Unit of the Westminster Hospital, after being in a coma for sixteen days.

Nobody judged her. Not one journalist even so much as hinted it had been anything other than tragic and unintentional. Everyone praised her and many could empathize with her deep suffering, having both her children perilously affected by incurable disease.  Tributes poured in for her unceasing work for the Andrew Bostic Appeal Fund that she founded in 1973, in memory of her elder son. The funds she raised helped to save thousands of children’s lives in the ensuing years thanks to research and better equipment. The Chairman of the fund, Professor John Hobbs, interviewed the following morning on the B.B.C.’s Today programme, said that in future the Fund would be known as The Andrew and Elisabeth Bostic Fund. “She was only an ordinary housewife” he said, “Yet she devoted so much of her time and energy to raising money to help other children, she deserves to be remembered”.

This woman was no “ordinary” anything – her strength and self-will drove her to the edge of what was possible, both physically and emotionally, for good and for ill. There was a darker side to this drive – a diagnosis of manic depression. Her extreme emotional energy gave her the drive to find a bone marrow donor for me five years earlier. Enlisting the aid of a large media organisation to publicize my plight she managed to persuade an otherwise very reluctant Westminster Children’s Hospital to undertake an unprecedented, high-risk procedure. If it had failed, the monetary and reputational costs would have been very high indeed with both senior NHS managers and the government. That it succeeded in making medical history and remained headline news in the tabloids for months, was testament to that drive – and also to her love for me.

“Simon must never walk alone” was the headline, as donations poured in to the newly formed Simon Bostic Charitable Trust, a fund launched by the Daily Express to protect my future and help other children with blood diseases requiring bone marrow transplants. This was the second time the kindness and generosity of complete strangers so typical of the great British public had come to my rescue. A special fundraising show was put on at the Theatre Royal Drury Lane at very short notice, with many celebrities offering to take part. I remember becoming totally overwhelmed and running up a side road, stamping my feet and refusing to go back to the assembled host of celebs, headed by star drag performer, Danny La Rue. They had come to the hospital for a publicity photo shoot. How ashamed I felt when my Dad came and said if I didn’t want to do it, would I at least do it for him and for my Mum. I cringe now to think of the tantrum they witnessed.

The noise of the media storm and the frenzy of posed pictures for newspaper articles seemed just never to end. With my consultants in my room where I had a little black and white TV, I remember watching my Father give an interview on Nationwide, a national TV news programme, begging the NHS not to cut funding to the transplant team at Westminster Hospital. Yet, as the days went by, it abated and I began to hear for the first time, what I assume still was the start of my own unquiet mind, my mania, my inner death wish. Screaming at first then reducing to a nagging pain – begging to be released and to be free to go with her.

I knew something was wrong, when he came for me that day. Who could blame me, after three weeks of quiet waiting, not seeing her, not feeling her touch or hearing her voice? “Sister?” I heard him say crisply. Then, in an agitated, pinched sort of way, quite unlike him, “am just taking Simon upstairs to see the Mother’s unit, ok?”

I was yearning for my Mummy, my entire support and reason for living. She was a force of nature, who had fought for me untiringly as I had stuttered and wobbled, then stuttered again during the early part of my life’s journey when fate (or destiny) had threatened her repeatedly with my death. I needed now more than ever her frenetic and unpredictable brand of motherly love and devotion.  Intertwined as it was with a fierce, fraught and wild moodiness, there was never any limit to how much she loved me and would do for me.

Three weeks earlier she had run out of the room in such anguish and hadn’t come back. On my  iron-framed hospital bed, complete with plastic mattress, in one of the desolate cubicles on Gomer Berry Ward at the Westminster Children’s Hospital, I had lain day after day awaiting news, sick with pleurisy, wishing and praying to God for something to happen but also hardly daring to think about it. My heart felt frozen with terror. Outside and inside this room, the July heat was stifling us all. Unable to comprehend what was happening to me or to her, yet knowing she lay in a coma in an intensive care bed in the adult hospital on the far side of Vincent Square, I stared at the sickly coloured walls as if I could actually see the emulsion slowly peeling itself off. Perhaps it too could no longer bear the fear and suffering it had been forced to witness.

Is this all happening because of me? Is it because I fell ill that she now lies unconscious on the other side of that window high up in a building Dad had days earlier taken me to see? I craned my neck skyward, squinting and not really understanding what I should be saying or what we were doing there. He seemed so gloomy and hopeless. Not knowing if I would ever see her again, I asked him what was going to happen? “I don’t know” he said. I felt desperate to be liberated from this mysterious hell of uncertainty and dread, where the gradually increasing guilt was invading my mind and my gut like a festering growth.

Sister Cook, was a tall, dark-haired young nurse in charge of Gomer Berry ward. She stands out in my mind now not just for her warmth and kindness, but because her dark blue uniform crowned by a lace “Nightingale cap” like a bird with a fan-tail held skyward, made her seem so stately and even taller to tiny little seven year old me! On the irregular occasions she, as a senior figure on the ward, would be called on to look after me, it was as if a huge swan swooped in, dropping to my level. I became putty in her hands as she looked at me with her gentle but firm brown eyes, persuading a defiant me to take big horrid pills or to let one of the nasty doctors spear me again in one of their regular, traumatic blood-letting rituals.

Before I or Sister Cook could protest, Dad had already grabbed my hand and led me from my cubicle and down the narrow corridor lined on both sides with the windows of other cubicles, with other isolated sick children in varying states of poor health, from the horizontal and tube-ridden to those sitting upright, smiling bravely trying to pass the time within those crusty, rusty old walls. At the end of this corridor was a set of grey swing doors and on the other side, stairs. We headed up towards the Mothers’ Unit.

I couldn’t understand why he wanted to take me up there: never in all the times I had been in hospital had either of my parents taken me to the Mothers’ Unit. There must have been a soft ban on patients going there, probably for medical reasons to do with infection risk, as I knew it was normally out of bounds. It was a place of refuge for the drained parents of the chronically sick children of this specialist blood disease and bone marrow transplantation unit. Here they could stay in small little bedrooms and talk to other parents in the common room. It was a place where Mum used to find some solace when, as always – always – she would stay in the hospital with me, as she had six years previously when first my brother Andrew and then I too had lain helpless and riddled with unexplained life-threatening infections. Here, in this grubby little unit, she would escape the ward awhile to smoke and drink and call a friend. Here parents would do anything they could to take their ever increasingly frantic minds off the unbearable reality of life with sick children with blood disease and cancer.

Just days after my seventh birthday, I had found myself feeling unwell for a few days with high fevers, night sweats and suspicious pain in my shoulder when breathing in. It was starting all over again. I had been well for five years since an experimental and miraculously successful bone marrow transplant had cured my genetic blood disorder. The first ever transplant from an unrelated donor had been accepted into my immune system and healthy donor cells had been produced. Happily, I had been largely infection free since then. I had even received a Child of Courage award when I was five for overcoming a life-threatening illness. This was not supposed to be happening again. Because I feared the inevitable, I tried to hide it. The prospect of yet another stay in hospital was terrifying. Of course, my hawk-eyed, hypervigilant Mother spotted something was awry and “pushed the panic button” which sent us hurtling down the gut-churningly familiar road to the hospital. It did not feel good to be going back to the Westminster Children’s Hospital that day.  We all feared the worst: my donor cells had been depleted; my own deficient cells had won the battle. We were back to square one.

On my admission to the ward, my overwrought mum discovered there were no rooms free in the Mothers’ Unit, her sacred refuge for coping and surviving. She became like a trapped wild animal, enraged despite my father’s attempt to reason with her. I remember her face red with anger, as if her auburn hair had been set alight, her very being aflame with mad panic. As fear and fury rose like molten lava beneath the earth’s crust, she grappled desperately with the nightmare of her claustrophobia, being trapped in that tiny, cold and sterile hospital room. Her fragile mental state couldn’t deal with this – without that escape where she could find just enough respite to cope with memories of terrible times past and fears of worse times to come. Here after all was where her beloved Andrew was forced to give up on his young and innocent life after so much pain and agony. The choice now was either to leave me there alone – impossible thought – or stay with me on a Z-bed in the grim cubicle.

Sitting with my legs dangling from the bed, I looked helplessly up at her and Dad as they faced each other off, shouting at each other, watching the angry words shoot back and forth like gunfire until the heat, pressure and decibel levels in the room seemed like they could smash the windows. Suddenly, she pulled open the door and charged off down the harshly lit corridor. As if pursued by the devil himself, she raced away down the corridor to the back stairs. With the force of an erupting volcano, its lava and molten rock spewing skyward scattering itself across the earth for miles around, burning everything in its path – flaming, unforgiving and unrelenting – she disappeared from my world.

It had become a pattern for her, I understood years later, that at these increasingly frequent moments of overwhelming stress, she would resort to a heavy dose of her prescribed tranquilisers with a Vermouth chaser. “I wasn’t thinking – I just needed to get away from it all for a while” she had said on one occasion to her fraught mother, explaining her potentially lethal cry for help. This time, it was not tranquilisers but a mouthful of anti-depressant drugs instead. “It’s OK, Rog” she slurred to my dad a short while later when he found her slumped in a chair by the public phone in the Mother’s Unit. “See? I only took a few of the other pills ….”

And so it was, that almost three weeks after he had found her, my dad was once more in the Mother’s Unit, grasping me this time, wavering and unsteady.

“Simon,” his tone so grave, the very air around us chilled suddenly.

“Mummy’s dead.”

And just like that, an axe sliced through the slender trunk of a youthful tree. I was felled.

 

Never say in grief she is no more

Only say in thankfulness, she was

 

One of the phrases that has come to stick in our collective consciousness in recent times is the slogan for Leave.eu’s referendum campaign, “Take Back Control”. Of course, the Brexit debate is a cauldron of complexity I am certainly not aiming to discuss here. But this slogan has caused me to think about the concept of control in general and more relevantly of course, how this applies to my life with chronic, life-long illness.

It is fair to say that control is a word which gives us all some pause for thought and does elicit a certain reaction, especially in the context of our relationships with others, both at home and at work. We talk of people being ‘controlling’ or we notice our impatience (and often anger) at being ‘controlled’ by others. Perhaps more deeply, however, we seek to have a certain control over our lives – or at least feel as if we do – in a very uncertain world. There are things which we mostly have under our control (cars we drive, what we eat, read or what we study). We know – and we may dislike – the fact that there are some things over which we have almost no control (our jobs these days, climate change) where we can only exert a minimal influence through our behaviour and doing ‘our best’. There are things which we have no control over but which we choose to do regardless, making informed (or semi-informed) choices about risk and safety (flying in an aircraft, or indeed to a much lesser extent due to the known unknowns, being driven in a car or coach). There are things which we make choices to do but may in fact not have as much control over as we would like (smoking and alcohol consumption). And then the things over which we can’t possibly have any control: death is the foremost of these (excluding suicide which is far too complex to mention here); and illness.

From the time we are able to crawl around, separate from our Mummies, we have been seeking to find control over our lives and destiny in some way or another, striving for autonomy and independence. It is not an accident in life that the “terrible twos” are so called. It must be SO frustrating to be experimenting with the world and its new and exciting stimuli and reacting accordingly but not being allowed by your well-intentioned parents to do exactly what you want! The journey to adulthood is indeed perilous for all mammals and we make it with varying degrees of success given the surroundings and circumstances we encounter growing up. It is never an easy journey and most of us have to learn to accept that the world is not quite a place where we can have everything we want. Many of us, however, instead of the gradual “ideal” development where we have appropriate time and space to acclimatise to the disappointments of life, are forced far too soon, into painful and often shocking realisations that our world is not the safe and supportive place we so need it to be.

I have recently been thinking a great deal about areas of my life over which I seem to have very little control. This is an area I have become concerned with lately “thanks to” my own reconciliation process, through therapy and also as a result of the diploma course in body psychotherapy I began two years ago. I have struggled very much since I last wrote a blog to come to terms with a resurgence of severe ongoing depression and anxiety. I have always suffered from this in some way or another and to varying degrees but have usually found ways of coping, some of them not especially healthy or rational. However, recent further serious medical problems and a rapid deterioration of my lung disease have brought on a sharpening of my mental health problems. With the right help and support, I am beginning to understand the effect on me in adult life of the multiple so-called “adverse childhood experiences” that befell me before the age of 11.

Living with a chronic illness, especially throughout childhood, is one of the more difficult hands to be dealt early in life. As infants, we humans are ludicrously dependent on our parents or caregivers for safety and well-being. We control almost none of it and our brain development and ability to regulate our bodies and emotions, is dependent on high quality care from birth on. Any slight mistake of nature or nurture in those early years will be potentially disastrous for that child’s neurobiological and psychological development. Studies and wonderful developments in neuroscience research are showing that for a baby or a young child, trauma caused by any “adverse childhood experiences” (or ACEs)* – and I would include the pain and invasive nature of medical interventions the likes of which I experienced as pretty adverse and traumatic – can have long term negative psychological consequences. Any serious adverse events, especially of a repetitive nature, can cause serious behavioural and emotional problems later in life (the scale of which varies depending on the circumstances and environment). This is especially true for traumatic events during the first two years of life, which actually cause the brain to develop differently. Hardly surprising this, yet something that even now is not given enough attention yet by the established medical system.

I have noticed when speaking to other people affected by chronic illness, especially those who have come through childhood with it and have a lot of experience in hospital, that we all really struggle to cope with many aspects of life. We experience much anxiety and all share problems such as rebelling against our own disease, non-adherence to medication, difficulty at finding or keeping a job, anger at ourselves, self-destructive or risk-taking behaviours and addictions. Most notably, I find that many people with chronic illness I speak to both in person but also on Instagram, have a shared tendency to blame themselves for their illnesses and are extremely hard on themselves – especially when they are sick! It just doesn’t make sense to people who do not bear this burden of long-term illness in life – something which in itself compounds and multiplies feelings of isolation and worthlessness.

Now, it is clear that doctors performing medical procedures are not trying to cause pain and trauma. Yet, the procedures are painful and in my case, very frequent and the feeling of helplessness, fear, abandonment and all the other ingredients for traumatic stress symptoms are there in abundance. It is different now but in the Seventies, the attitude was much more austere and paternalistic with little thought being given to a patient’s emotional welfare – disastrous for children.

Much of the consequences of – and our emotional reaction to – “trauma”, (as well as what we now refer to so commonly as anxiety), can be attributed to the ancient and primal survival instinct in all of us known as the “fight, flight or freeze” response. This is initiated when we come into contact with a real (or perceived) threatening situation. All sorts of significant automatic hormonal and physical reactions occur which are governed entirely by the “autonomic nervous system” (i.e. we have no conscious control over them – heart beat, insulin production, digestion) which prepare the body to respond to immediate danger. We may need to fight, to flee or in some cases, to freeze (i.e. for an animal escaping from a predator playing dead may be the only remaining option to improve survival chances). Now, we modern humans are rarely fleeing from wild animals but life is full of stimuli that excite us in some way and need confronting or escaping from, making us angry, frightened or alarmed. We are constantly (and unconsciously) scanning our environment for safety.

Having confronted or escaped the “threat” whatever that might be (and it could be the pain of a doctor’s needle, being repeatedly screamed at by an angry parent when you are young or being cut up by the idiot driver on the way to work this morning), part of the process is to react and express emotion. Pain for example can cause us to become angry – and is a quite natural reaction once our brain has enabled us to quickly remove ourselves from the source. Yet often we are told as kids to not get angry or to stop being such a baby. Our natural reaction to express pain or anger for example, is blocked and stifled which can then negatively affect our ability to recover fully. Also, as kids we are often less able to escape from the source of our fear – again, hospital procedures come to my mind but also being repeatedly shouted at violently and told you are bad or stupid by an angry parent is another.

In my case, I had a great many early medical interventions from day one. It is only as recently as the 1960s that the medical establishment acknowledged that infants do actually feel pain (unbelievable as that may sound, it is true). Never mind the chemotherapy and lancing of painful abscesses, the simple task of drawing blood is one of the early memories that sticks in my mind: dreadful memories of being pinned to a bed in decaying windowless rooms, blinded by stark strip lighting above while several men (rarely women back then) in white coats mercilessly pierced and stabbed at my body time and again. My mother used to have to stand back and just allow it all to happen to both me and my brother and as I screamed for her to help me, she had to just watch helplessly as a bystander. She in turn would complain to her mother that she felt so guilty about suggesting they give up on my arms and try and get the blood out of my neck instead. Yet as a child, I had no ability to rationalise any of this, and was told just to “be brave” or “it’s for your own good!” The pain of it all was worsened by the fact I must have hated my mother for this betrayal and could not possibly understand the brutality I was experiencing. To make matters worse I was mostly prevented from fully expressing my pain for fear of upsetting my mum even more or being perceived as naughty or a baby or some other such nonsense that adults tend to come out with. I know I sound angry and emotional about some of this – GOOD! To me, it was genuinely torture. I used to bang my head against the steel bars of those prison like cages they call cots in which they left me alone for hours at a time.

Now, I barely feel getting stuck with canulas and needles but I remember when doctors couldn’t find veins, they would insist on digging around – up to six or eight times they would try. Nightmare. This just doesn’t happen anymore, thank heavens and I am told things have changed now in terms of what parents and caregivers are told should be their role, and how medics now approach poor children in these frightening and awful situations.

To be honest, it does get easier as an adult but the fact is I have developed a shocking disconnect from my body and some pretty awfully blurry and confused personal boundaries. When I was seven, my mum took an overdose and died at a time I most needed her. Before that she was very unwell with depression and manic anxiety making her extremely unpredictable and frankly, terrifyingly loving. As an adult I can rationalise how awful it was for her. As a baby, I also lost my brother and you would be forgiven for thinking this wouldn’t have affected me too much – I thought the same until relatively recently until I understood the burden his loss had on the family unit as a whole and how affected I would have been by his death, given we were very physically close as young brothers and how bereft my poor Mum and Dad were after he died.

In many ways, I also lost my dad the day my mother died, as the grief and shock affected him in ways we couldn’t have imagined. By the age of eleven I was being looked after by my grandparents who sent me to boarding school (spending just weekends and holidays with them) – probably the best thing that happened to me in my childhood. That says something.

I know my story is quite extreme in terms of trauma. There are many children who endure far worse things than me and to be honest, I was so lucky as I had enough care, love, support and good intention to be able to survive and live to the ripe old age of 47 (and counting) and have been able to form close interpersonal relationships. The love and care I received in spite of the traumatic circumstances was “good enough.”  Yet many of us suffer terribly with what life throws at us and at our parents as we are growing up. It is my belief based on my own personal experience as well as on some very good published evidence (see below TED talk as an example), that childhood trauma plays a significant part in adult illnesses and I hope to explore this more as time goes on. But it is obvious how little control I have had over my childhood circumstances and the far-reaching effects this has had on me, and my ability to control my present. Yet it does mean I have had to slowly learn to accept what is happening in the present moment, rather than constantly being surprised at the extent and strength of my very strong emotions. I am learning techniques such as mindfulness, yoga, Qi Gong and Tai Chi to better equip me as I connect with my body again as well as coping with a lot of anxiety and depression.

But the truth is, life is really hard for everyone and we struggle to maintain any control over it – we are faced with working all the hours available for often little reward to line everyone else’s pockets, at the same time as coping with illness, divorce, redundancy and daily tales of woe and disaster on the news and in the media.

Hardly surprising therefore that the success of the Vote Leave campaign can be attributed to this notion of “taking back control” playing into the psychological weakness that affects us all daily. I don’t wish to enter into the politics of it but as far as this concept of taking back control is concerned, take it with a pinch of salt: it is a trick of enormous control in itself and it plays deliberately on people’s vulnerability and need to apportion blame. I am afraid when it comes to life, we are all puppets on a string, able to influence our destiny of course, but ultimately at the mercy of forces way beyond our control, no matter how you look at it. We all know it instinctively. It is no use seeking blame or thinking that you will be better off if (…insert own words here…). When it comes to it, we are all alone and we should focus on connecting and supporting each other, helping each other as a community to cope with our vulnerabilities, regardless of our circumstances or where we come from. In my humble opinion, it is this which will make us all happier.

* The ACE scale was drawn up as a result of research in the US and basically is a fancy way of referring to psychological trauma caused during childhood. The research relates specifically to the range of physical and social health problems encountered throughout the life span of individuals who have undergone such trauma. Technically (and curiously) it doesn’t include invasive medical interventions (or childhood bereavement) on the list but does include:
• domestic violence
• parental abandonment through separation or divorce
• a parent with a mental health condition
• being the victim of abuse (physical, sexual and/or emotional)
• being the victim of neglect (physical and emotional)
• a member of the household being in prison
• growing up in a household in which there are adults experiencing alcohol and drug use problems.
It is important to note that the ACE scale is a guideline only as each individual is so different. No two people react the same way when it comes to trauma.

For further information on ACE research, try this TED talk: https://youtu.be/95ovI J3dsNk

 

I expect that if you were to ask anyone who knows me what I am most passionate about in life, even those who know me only moderately well would mention travel somewhere near the top of the list. The letter to God that I wrote as a young boy (below) marked the beginning of a life-long passion for foreign travel and modern languages.

I think I wrote that note after my first trip abroad. We were a working-class family living in a tiny cottage in rural Hertfordshire and had suffered a series of highly-publicised family tragedies. My brother Andrew died, my life had been saved under extraordinary circumstances, and somewhere in the dark midst of all that, my father, Roger – normally a rock of silent support for my Mother – was diagnosed with lung cancer and underwent radiotherapy and massive surgery to remove the affected lobe of his lung. Up to now my Dad had worked as a painter and decorator, and latterly as a factory foreman but his health now forced him to take even lower paid jobs. My Mum had a job before my brother Andrew and I were born but  couldn’t work afterwards because she needed to look after me in the years following my transplant.

We had no money and holidays were limited to hunkering down behind a wind breaker on a blustery day every Summer on the beach at Walton-on-the-Naize! Mercifully then, a generous donor (a Maltese businessman I think – I wish I could remember) stepped in and offered to pay for us to go on holiday. So, off we went to Malta.

Here on this little rocky ex-British crown colony just off the coast of North Africa, as if by magic, the dreariness and drudgery of life and the emotional heaviness that had engulfed us seemed to lift as we stepped out of the plane onto the metal stairs. I remember the warm air which rushed against my face and the sense of relief it seemed to bring in its caressing embrace – like being wrapped in a warm towel. I remember so clearly the change in light: rays of sunlight and wafts of Mediterranean air pouring into our apartment on St Julian’s bay while the Cat Stevens song, “Morning has Broken” played loudly, my dad singing along in full-throated voice as he often did.  Firmly held in my memory too is my appreciation of the difference in temperature; not just of the air outside but also of our mood in general. Like the weather, we were altogether more temperate; warmer, lighter, breezier. Dare I even say, happier? I carry around a photo of my Mum and me posing on the docks – one of the few pictures I have of her when she looks happy and carefree and her brow isn’t creased and darkened by shadows of worry and fear. At home, it seemed we dare not be too happy for too long as we never knew what lay around the corner – as if being on high alert protected us from the threat of further hurt and disappointment. This state of high alert endures in me today and travel (even just the thought of it) remains one of its most powerful antidotes. Stepping out of airports in warm climates nowadays brings that same feeling of calm and wellbeing as for a moment, it’s as if I have escaped the realities of the world and of my life.

Physically too, there were discernible signs of change and improvement on this little island. My infected spots, annoying rashes and a big boil on my leg, little but annoying infections which could turn nasty at any moment and which plagued me often (and still do), just disappeared overnight. Of course salt water and sun play their part but perhaps there is also a link here to be made between the emotional and physical: I kid you not, when we landed back again in dreary, rainy old Britain they came right back, almost before my eyes.

So, it is no surprise then that, in spite of it being one of the most ill-advised career choices an immune-compromised person should make, I became a tour leader. I remember chatting away in Maltese to the cleaning ladies (who loved the fact I wanted to learn their language) and it became clear to everyone that I had a gift for languages. This gift led in due course to a first class degree in modern languages and was my passport to a career in travel. I started with an American company leading groups of 14-18 year old American high school children and their teachers around Europe and then for a leading adventure travel company leading small groups of up to 18 travellers all over Mexico and central America, East and West Africa. No sitting behind a desk at Lunn Poly for me – no. I needed to travel to far-flung and exotic parts of the world where there lived a “vastly increased variety of infectious microbes compared to Europe” – I quote one of my doctors who took care of me in hospital for a week after returning from Burkina Faso. And what an incredible experience it all was – I don’t regret a moment. Whereas before I had been struggling terribly with the depression of not knowing what I would do for a living and had been devastated at having countless ideas written off by my health issues compounded by a terrible lack of confidence, at selection days for tour leaders/managers, it seemed I just could not fail – I have that kind of personality, I suppose. As my Grandmother told me, I am just like my Mother, a born extrovert. It was meant to be and it was amazing and I enjoyed a 15 year long career in travel that I had hitherto only ever dreamed of.

Those days are behind me now as, due to failing health and fitness, I had to leave my last role as Head of Operations for a wonderful little company specialising in charity challenges.  But my life has been immeasurably enriched by the places I have been and the people I met: those who travelled with me as well as my colleagues and most importantly of course, the inhabitants of these lands both human and animal!

Looking into whatever the future holds for me can be daunting and scary but it would be bleak indeed without travel featuring prominently; I am not one for compromises and intend to continue far-flung travels as long as I can (although being too remote from decent medical facilities now is not really an option) and you would not believe the cost of the insurance. The sights and sounds of travel have always taken my breath away. Now, nothing is different – it’s just I am much more breathless in a different way and for different reasons! Despite being forced to traipsing around with a portable machine to help me oxygenate my blood, I insist that my travelling days are far from over.

I may no longer be a tour leader but on a recent trip to Paris, outside the Basilica of St Denis, I tried to recapture some of the magic of those good old days when I would stand in front of a group of nonchalant looking teenagers doing my best to keep them interested … See what you think.

What a Carry On….!

Coming soon: Breathtaking Travel ….  in Sicily

It is hard to believe that today, 27th July, 40 years have passed since my mother Elisabeth Bostic died, age 33, from a tragic and accidental overdose. One of my main objectives for this website is to tell her story. She was not just a devoted mother, wife and daughter. She was a forceful campaigner and fundraiser who persuaded doctors to take risks they may never have done otherwise and enlisted the help and support of the press and public to save her son.

Her campaigning led to the first ever register of volunteer bone marrow donors, which led to a donor being found for me, and the first ever bone marrow transplant from an unrelated donor. Shirley Nolan, another mother whose son, Anthony, would die without a transplant from an unrelated donor, rang my mother as soon as the news broke, and brought Anthony to London. That same panel of donors which had saved me became the enormous register of donors we know today as Anthony Nolan.

On this 40^th anniversary I came across a newspaper interview with Shirley, given the week after my mother’s death, where she speaks of the courage and determination my mother inspired in her. It is a testament to the heroic, herculean strength that a mother will display in fighting for the lives of her children. Both their stories and the spirit of their endeavours live on in the charity and donor register that bears Anthony’s name.

Reading this article and remembering her legacy provides some solace for me today. I just haven’t the words to express how it was to lose her in this way, and at that time, or the effect this has had on me since. I am just so grateful that I did have her when I did and am able to connect with her through this story.

Original article is credited to Richard Shears in Adelaide and I think appeared in the Daily Mirror at the end of July 1978.

If any one person in the world understands the stresses that Elisabeth Bostic had to face before her tragic death it is Shirley Nolan.

Possibly even more than members of Mrs Bostic‘s immediate family, Mrs Nolan can comprehend the full depth of all the sorrows and tiredness that led to that last confused action of accidentally swallowing an overdose of drugs.

Because Mrs Nolan is a woman who was gone through the same experiences: the joy of giving birth to a son, swiftly followed by the heartache of being told that he was certain to die. And because she too had the willpower to fight on against immense odds, in the hope that her child’s life can be saved.

Mrs Bostic died in hospital on Thursday after being unconscious for two weeks. Her son Simon, the world’s first bone marrow transplant patient, had been taken ill with pneumonia and, said her husband, she was ‘so upset that she made a terrible mistake’.

Through their shared problems the two women met and became close, although they lived on opposite side of the world.

“In the battle to keep my own little boy alive Liz was my greatest ally” said Mrs Nolan at her home in Adelaide yesterday.

“I had wanted to end it all in the early days and it was Liz who kept me going.

“The last time I saw her, the very last word she said to me was ‘I don’t know how you keep going but don’t stop’.

“And now she’s dead. Why is life so cruel?”

Mrs Nolan, at 34 the same age as Mrs Bostic, spoke to me bravely about the sadness that surrounded her own life and that of Mrs Bostic, whose son had an operation in 1973 because a suitable donor was found.

GLIMMER OF HOPE

For Mrs Nolan the search for a donor for her seven-year-old Anthony goes on.

“I have lived through seven years of absolute hell,” she said. “Liz lost one little boy with the same problem, but when Simon had his operation she told me that the worst of her troubles were over.

“I cried for two hours when I heard she had died. And then I telephoned some close friends of hers in England to ask what had happened.

“I can still hardly believe that she has gone because I strongly believe that it is through her encouragement that I am here today.”

“Yes I’ve wanted to give up. I don’t expect anyone to fully comprehend the mental torment of having to care for a little boy who could just fade away at any moment. Even when I was having that traumatic telephone call to England to talk about Liz, Anthony started haemorrhaging, bleeding from the nose. At this very moment he’s alright. Internal bleeding could start again at any second.”

The two mothers first spoke after Mrs Nolan read about Simon Bostic‘s operation in 1973. The news gave her a glimmer of hope for Anthony who, in 1971, doctors had said was incurable.

“There is no point in keeping him alive,” Mrs Nolan remembers the doctors telling her and that night she and her husband drank a bottle of brandy between them and wept buckets.

When she heard of Simon‘s operation she telephoned Mrs Bostic. “She told me that she had watched one little boy, Andrew, die from the disease but she was confident that Simon was going to be alright.

“Her words were enough to take me to London where we met and began what was and still is a long hard struggle to find donors for helpless children like Anthony

“We fought hard together to raise funds for research and we spent many hours talking on the telephone when I was living with Anthony in the cottage in Kent. Last time we met was at the Mansion House where tributes were paid to Mrs Bostic and myself.

WILL TO LIVE

“On the way back to Charing Cross station where I was catching the train to Kent I clearly remember Liz chatting to me and saying:

‘Shirley it never ends, does it? Even though Simon had a successful operation I still wonder sometimes whether he will always be alright.’

“I knew that deep within our hearts we each felt strong sympathy for the other. At that very moment in the car as she spoke those words on the way to the station I realised that in spite of my worries, I wasn’t really alone.”

“And now that Liz is dead I am all alone again with my sick little boy and a hard fight ahead.”

“People will wonder whether I can go on like this not knowing where the future lies. Will it be a feature of happiness or grief?”

“Liz’s death has struck me badly but I must always be aware that my giving up is going to do nothing for Anthony. I started a fight for him and I must finish it.”

“Last December the doctors told me he had a week to live. It brought me down to a low ebb but I was determined not to give up, and then he had a miraculous recovery. He is living now on antibiotics and psychologically he is much better. At one stage he had given up the will to live, but he now goes across to the local primary school to play for half an hour with the children every day.”

Mrs Nolan will be flying to London in September for the official opening of the Anthony Nolan Laboratories in Westminster Hospital where the first national tissue register in the world has been set up. It was thanks mainly to Mrs Nolan that the £1,200 for the equipment was raised. She is working on the final stages of a book about life with Anthony entitled “A Kiss Through Glass”, and which she says will now have an additional section devoted to the life and death of Liz Bostic.

“I want her to be remembered” said Mrs Nolan “Someone who gave me the courage to fight on deserves a lasting memory.”