Pain and illness

<--Back to My Mortality

The stories we are told as children make a difference: are other people basically kind or competitive? Is everybody beautiful or am I never good enough? Is death friend or enemy? I was told from an early age that while I would probably live to old age, I might get run over by a bus so I should value each day.

My parents were Christians but they didn’t worry about death and they didn’t believe in hell. The focus was all on how to live this life.

So, that’s cool. I have always known that death waits at the end of the road and sometimes nips up on you like a joker. Friend then, rather than foe. My nonchalance ended when my 92-year-old mother became very ill and entered a nursing home. She is lonely and confused. I am sometimes overwhelmed by sadness at what her life has become, and I fear it for myself. It is fear of dying rather than death – I know death is the end of consciousness and a welcome relief for an old body – but they are imaginatively connected. If dying means losing freedom and control, it sounds like being dead but alive enough to experience it, which is scary!

I aspire to grow old as Bertrand Russell advised: like a river which flows more quietly and eventually merges into the sea, not lost, just dispersed. We all influence and change each others’ lives in an endless evolution. Our moment passes but future generations stand on our shoulders. I hope the values I hold in life will serve me in dying – thinking of others as well as myself, making myself busy with lovely or helpful things, not off-loading too much on others – though at the age of 60 I still need lots of practice!

My mother and my grandmother both dropped dead – out of the blue – apparently well and happy one minute, and dead the next. I am now 10 years older than my mother was when she died, and twenty years older than my grandmother. I have regularly taken funerals for people much younger than me and have recently been treated for cancer.

You might think I should be well aware of my mortality. But I am not yet living my life as if I know my days were limited. If I have any fears it is that I will die too late – after the ‘me’ that I know and care about is long gone. I am thinking now of the woman with dementia who could scream and cry for days on end. Death can be a friend that keeps away for too long.

Recently, I was meeting with a woman, diagnosed thirty years ago with cancer, who set out making happy memories for her children who were then quite young, and trying to ensure that they would be strong and independent for when she was no longer here. Thirty years on, with a life full of happy memories and now terminally ill, her awareness and acceptance of the imminence of death made her determined to enjoy every single minute she had left. Her life was so rich for it. Looking at a tree was blissful.

So I questioned myself: am I living as if I actually believed my days were limited? Is doing ‘life housekeeping’ – preparing for being dead – enough? The answer was clearly no, on both counts. So, I asked myself, if I knew for sure that I had a matter of weeks or months left, how would I be fully savouring my gift of life? And I am currently working on this.

During my life I have been very fortunate, in that I have experienced and am experiencing many wonderful things, including great love. I have visited beautiful and interesting places, but have also had difficult times due to family illness. I derive great pleasure in talking to people from different cultures. These things all give perspective to life.

Being out in nature is important to me; I experience great pleasure in just looking at a tree, a river or a flower, or in seeing birds and animals. These vary so much depending on the light, the time of year and the situation.

My own mortality has only passed through my mind occasionally, though in a few weeks’ time I shall be the same age as my mother when she died. This fact is making me pause to reflect. As with many people getting older, I do have a fear of dementia. I really enjoy puzzles and games, especially with the thought that this may help to keep my brain functioning satisfactorily.

As a humanist, I believe that we have one life so must make the most of it and appreciate it to the full. We live on in the memories of other people, especially our family and friends.

I would like to have means to end my life if it becomes intolerable. Having that ability would, I think, be reassuring. I also fear not being able to action this myself. I have experienced three elderly relatives who, near the end wished their lives to end.

Being older also gives me the opportunity to reflect and focus on what is important to me in life and to savour it.

I am not afraid of death or when I am going to die, just how I am going to die. My life is finite. I will have to die sometime, probably not of my choosing. If I had a life threatening and debilitating illness, I would like the choice of when and how. Bring on ‘Assisted Dying’!

I have thought of and accepted my death for a long time – as a teenager, in adulthood and now, my senior years. There have been difficult times when I thought I would end my life. In those dark times I dwelt on who I was and why living seemed unbearable. I knew I would not have any regrets if I did die but realised this would have a huge impact on those closest to me. Somehow, I found positive thoughts: recognising the love around me, difficulties I had overcome, and that life can be exciting.

Life is for living, through good and bad. We all have different experiences of what are ‘good’ and ‘bad’ times. My bad times have not been terrible, although they felt it at the time. I have been fortunate, with my upbringing and education. I learned I must take responsibility for my life as far as I can, to ask for help or accept love and support from other people, even from strangers, as little acts of kindness can make a huge impact.

I accept my death will happen as I am human. So, I want to live my one life being kind, respecting others and making the most of what I have. Experiencing each day, good or bad, offers new opportunities to learn, enjoy simple pleasures and to make a positive difference in this world. My death will be the end of a simple life.

In my late sixties, a routine blood test gave an off the scale reading. I knew I’d got a problem. The consultant confirmed the worst.

‘Is this going to kill me?’ I asked.

He didn’t mince words. ‘Most certainly it will’

Dozens of appointments and treatments followed and a lot of thinking. I decided to confront, not deny, to be happy, not miserable, and to use every minute.

For me, the issue has three parts.

One: That I’ll be dead. I really do believe it will be just like it was before I was born. So being dead holds no fears.

Two: The potential pain, indignity and distress of dying. I have always supported campaigns for assisted dying. Now I have even more reason to. I have spent time researching how I might protect myself and have taken what steps I can.

Three: The frustration of leaving the party while I’m still enjoying myself. I don’t begrudge others the fun they’ll have when I’ve gone, but I could be fed up thinking of all the happiness I’ll miss – my family and friends, especially the grandchildren growing up, the countryside, music, good beer, hot buttered toast and other pleasures of the flesh! So, I set about squeezing maximum enjoyment into what time there is – seeing more of the family, walking every day, exploring Wagner’s operas, drinking more beer, and the rest.

Postscript: My initial prognosis was two to three years. I’ve been spectacularly lucky. Things were not quite so bad – one important diagnostic parameter was atypical and deceptive. My salary package included health insurance which paid for an expensive, unproven but promising treatment not available on the NHS. Now, four years from diagnosis, I’m almost completely without symptoms and enjoying life – perhaps more even than I did before!

I have long felt that belief in life after death was just arrogant wishful thinking. Fortunately, early in my student days at Imperial College in 1971, I discovered The British Humanist Association where I found others who also chose to live a caring but rational, evidence-based life.

I have always been conscious of my mortality due to the premature death of my ancestors; I never met either Grandfather, one Grandmother died at 65, my Mother at 55, and Father at 73.

I have led an active and stimulating life and try to make every day count. What I most value in life are my family and friends. Simple pleasures, like dog-walking with grandchildren through woods by a river, provide much joy whatever the season.

Now, approaching 70 years, I am aware of my declining health. I do not fear death as I do not expect to be aware of anything afterwards. What I do fear is life without quality and a lingering and possibly painful death.

Some years ago, I joined EXIT, formerly known as the Scottish Euthanasia Society, where I learned how I could plan the end of my life, simply, without suffering or traumatising loved ones. This knowledge continues to empower me in the belief that I could have control over the end of my life.

I will be satisfied that after I die, I will live on in the memories of those I loved.

I’m not afraid of dying – but I do think about what could possibly be involved in the run up to that event.

As a fiercely independent woman, the prospect of a long debilitating physical illness or of me losing my marbles makes me cringe!

Since the death of my son in 2002, my life has been far from care-free but it has been fear-free. Knowing that I have survived the worst possible thing that could ever have happened to me – I feel that I have nothing to fear, including death.

People with religious faith have asked me how I can face the end without the comfort of planning to be with family and friends again in an afterlife. However, I can’t gain comfort from something I don’t believe in and simply concentrate on enjoying life now.

My only concern about me no longer being in existence is the pain and loss that may affect those who have cared about me and valued having me in their lives.

I know just how devastating grief can be and during my thirteen years of conducting Humanist funerals, I see that in other people in some way most days.

I hope that my nearest and dearest won’t suffer the loss of me for a few years yet and meanwhile I will continue to make the most of every day with family and friends – hopefully creating a catalogue of memories for them to look back on in the future.

On mortality

To try to understand my own mortality I must look back at my life and look forward to my death. Mortality meaning the fact that I am subject to death, I am not immortal. In my mind I wish to dispute this solid truth. Although I am old, I try not to be old.

My death will be defined by my life; the life I have lived. On balance, without false modesty, I believe that I have been more positive rather than negative. I have experienced great successes and acknowledge dismal failures. Such has been my life’s pattern. I was an unwanted child but I am privileged to have known great love for forty years, from my wife who departed some years ago. In my life, I have touched people, influenced them or given cause for reflection. Those whom I have inspired or taught and, in more recent years perhaps, those whom I have married and the loved ones of those whose funerals I have conducted. I will have left behind some monuments, things that I have made or written, that will outlive me. Eventually, these also will fade away. So, what is this life of mine? I want to say that I have done my best to be a useful contributor to the kaleidoscope of events and philosophies that have surrounded me and, I suppose, none of us can ask for more than that.

I have no fear of death but great concern about the manner of my dying. I might come to the point where I am a burden on others or am stripped by disease of my dignity. If I see that coming I shall slip, quietly, away.

On Mortality

Our temporariness is such a short time.

I strive to do my best.

I strive to accept my best is ‘good enough’.

I fear deterioration in mental and physical capacity. To me, those capacities enable me to contribute my best to life on earth.

On the other hand, I accept an end to living. Life on earth thrives from cycles of ideas, inputs, happenings – beginnings and endings and lives in between.

I accept my influence is in the now. We are finite beings.

We need to prepare ourselves: to learn to step aside; to pass on to others; to pass on the baton!

The pandemic has emphasised our vulnerability and our mortality. I have talked more about death – the end – during this unusual time. The end is non-negotiable. It is harder to talk about getting there. This path is more ‘messy’, more unpredictable.

My uncle whom I did not know well died recently at the age of 94 years. I knew him from afar as he emigrated to Canada with my aunt in 1955. From when I was a child, I thought of him as an adventurer and courageous. He broke the mould and broke the rules of the time! He grasped life and opportunities. He was a thinker and wise counsel, a considerate, kind man. His family was very precious to him. His aspirations for his children, with his help to prepare and support them in their lives, was for them to be kind to each other and to others. He and my aunt also discussed the end of life and made plans, and fulfilled them courageously.

Thinking about his life and his achievements has focused my thoughts on my life and my end. Yes, we must all talk more.

Two days after my 56th birthday, without any warning at all, I was floored by pains in my chest. Without hesitation, my husband took me to A&E who swiftly declared I was having a heart attack. I had not been ill, not at all. That day I’d walked in the sunshine, had a chicken in the oven, washing on the line. It was January and the day was clear and blue. I had been reading quietly whilst the chicken roasted when the pain gripped me at 2.00pm. By 3:30 pm I had had a stent inserted in an artery by an extraordinary team of professionals and was being wheeled back to the ward. My husband was standing there holding my jacket and shoes, pensive, concerned, and reached out and took my hand.

In two months of recovery I had a lot of time to reflect. I was told that due to the quick actions of my husband I had no lasting heart damage – this is good! I was also told that I had a congenital heart defect that had only emerged now in middle age, so that was good to know! By holding onto the science, I gradually emerged from the emotional gloom and let go of the fear. And by absorbing the love of all those around me, I climbed back to health.

Science matters, love matters, and how we live our lives matters. Death will come to me one day, of course. But until it does I am going to carry on living my life openly, fully, and lovingly, believing this is the best legacy I can leave about me to those who I love who will live life beyond me.

At 85, with the coronavirus circling, I of course think about my mortality. But it seems to me there is a difference between wanting to live, and the reasons for doing so, and not wanting to die. I don’t want to catch the virus, I don’t want to die period. That is instinctual. If I say to someone ‘I don’t want to die’, it would hardly make sense for them to answer, ‘Why not?’. There are circumstances that might make one want to die – intense and incurable pain for one; but without them, the survival instinct is paramount.

What though are the positive things that make me want to live? I have no children, but I do have nephews through my wife’s family, and we look after them. I look after my wife, as she looks after me. The sense of being valuable to others is key. If I couldn’t be useful to anyone at all my desire to live would be much diminished. But not extinguished. I’d still look forward to enjoying what I enjoy, books, music, movies, pleasures of the table. For a keen chess player as I am, there is always the lure of playing one more good game. And so forth.

All said and done, I want to go on living. But my time will come. I have two sources of comfort about that. One is the famous saying of Epicurus, ‘Where I am, death is not; where death is, I am not.’ That seems to encompass the finality of dying, and its mysterious absence.

And then there is the universe, its unimaginable size and age. The atoms that made up my person and their attendant consciousness will be infinitesimally small specks in the vastness. The ‘I’ that I was will be in good company.