The posting date was delayed due to Easter, needing to give care to mother. There have been two things in the news that interested me this week.  Firstly the death at 17 yrs of Hayley a progeria (early ageing) sufferer and the announcement that Clive James, writer and broadcaster is not dead after all, though he is very ill, and that he has brought out a book of poems “Sentenced to life” about his time terminally ill with leukaemia ( and also deaf, coughing loss of energy and mobility)

Sadly also a friend of mine died suddenly last week. Though retired he remained work orientated and active, almost driven to help others. He had lived successfully with a number of medical conditions, and though under the weather with a virus, had not expected it to progress to his death. Another person who illustrates to me the issue of not leaving relaxation, enjoyment of retirement, your wife, family and friends until too late, if you have the choice.  This sad fact has taken my energy away a bit, reminding me of existential uncertainties that now pre occupy my brain whilst I rework accepting them.

Progeria

Progeria is referred to in the press as aging prematurely and I wondered what information this helped us discover.  A bit of research told me that it is a rare genetic condition (1 in 4-8 million people born have it).  The code of the DNA is change at one place and so the protein for the membrane round the nucleus isn’t made properly. The structure of the nuclear membrane is important for the process of cell duplication (replication and division). And therefore this cell division is defective.   This leads to people with the condition having a number of problems we normally associate with old age:- atherosclerosis (hardening of the arteries), kidney failure, loss of eyesight and heart and blood pressure problems.  Individuals with this condition retain their normal mental and motor development unlike normal ageing.  Death is usually in the early teens. Hayley lived to 17yrs. She campaigned to increase education of the condition.  She published an autobiography “Old before my time” which has sped onto my reading list to see what can be used to help all of us who face ageing. The issues of loss, or living despite the problems may be more vibrant and illuminating from a teenager’s perspective.

There are other  premature ageing conditions called “accelerated aging diseases” (e.g. Werner syndrome, Cockayne syndrome or xeroderma pigmentosum) where the problem is  defective repair of our genetic material. This is more like what we think is happening in normal ageing.  None of these conditions cause changes in every aspect of ageing that we see in normal ageing.  I will investigate the science further.

“Sentenced to Life”

Clive James has had a possibly unique experience of having his obituaries published while still alive. He was apparently so ill at the time his death was announced that he didn’t think he would live so long and so didn’t correct the news of his death.  (I have only been reading his work later in life – I thought him bumptious and sexist when I was young and so ignored him. Later I have enjoyed reading his work as it brings back an era of the newspapers when they were much more powerful and were based in Fleet Street.  This was also my father’s world (he is long since dead) and so the writing was fascinating).

Clive appeared on BBC breakfast, interviewed by Charlie Stayt and this is how I learned that though gravely ill, announcements of his death were premature. He has faced his mortality and written poetry about his journey; of things that become important, how frustrated he is with his loss of energy and health, his mortality, memories what will happen to them and many of the things I want to think about but am too afraid to face and indeed don’t know how to put into organised thoughts or words that might help.  His humour makes it readable, poetry makes it short enough, his talent means the words he agonised about mean much, both deep and shallow and speak to us all as well as the members of his family, particularly his wife who he wrote it for. There is a lovely piece in the Guardian on line:- http://www.theguardian.com/culture/2015/mar/15/clive-james-interview-done-lot-since-my-death

My mother hugged the slim volume of poems. She has always liked him. It was worth the money a) to read them before I gave the book to her – naughty I know – and b) to see her joy c) it gave her something to dip into whilst at my place having the obligatory Easter roast and afternoon entertainment.  She will get a lot from them over the coming months and years and I will hear them quoted back at me!  I will inherit the book ready for my time I hope!