OPINION: Living right up to the moment of dying - North Devon Hospice

“We had fish and chips for lunch” exclaimed our excited grandchild at her school pickup “And then we played games in the Jibberly Ball.”

A pause. A thoughtful moment. And then the realisation…‘Ah the Jubilee Hall’, built in honour of the Queen’s Silver Jubilee some 45 years ago. And now, as we mark another Jubilee, I find myself reminiscing of 1977 street parties with trestle tables, bunting, flags and soggy sandwiches, and yes, it rained an awful lot that week.

And so to 2022. All celebrations have the possibility of feeling and being very different. Emerging from the uncertainty and anxiety of Covid, we find ourselves immersed in a fluid and precariously balanced world where the realities of a rising cost of living and the consequences and atrocities of war fill our screens, gatecrash our homes and seriously impact our lives. Sometimes we feel we’re drowning.

So here’s a question ‘How can we really celebrate Jubilee whilst holding the reality of our day to day lived experience?’ Let’s pause that thought for a moment and consider what is meant by ‘Jubilee’.

There’s a bit of a clue from the Middle English and Old French meaning of the word, a ‘ram’s-horn trumpet’ with which a ‘Jubilee’ year was proclaimed. In some cultures, this signified a year of freedom and restoration. Perhaps rams’ horns have now been replaced by car horns, kazoos, rattles, whistles or vuvuzelas (with their typical pitch of B flat), but I digress.

Here then stands ‘Jubilee’ representing freedom and restoration and offering the beginnings of an answer of how to celebrate life amidst struggle and suffering. And so we turn to someone who has managed to hold this tension and in doing so, graciously given us so much.

Dame Deborah James, ‘the bowel babe’ who was diagnosed with incurable cancer six years ago, has not only shared her struggles of living with illness and facing her death, also she has used this platform to talk about celebrating life’s preciousness day by day. As one journalist wrote, ‘she is living right up to the moment of dying; the approach of the end has not stopped her from living, but has made being alive even more resonant with meaning and love.’

Somehow Deborah James has managed to really live ‘Jubilee’ whilst holding the reality of her day to day lived experience, and in doing so she has helped us think about our own mortality and ask the question, ‘What will it be like for me at the end of my life?’

Deborah’s use of social media platforms from @bowelbabe (which has over 900k followers) to ‘You, Me and the Big C podcast’ has given us a freedom to talk about taboo subjects, cancer, bowels and death, all within the context of embracing life to the full. There has been no divide, no one or the other, death and life, joy and sorrow are not separate, they dance together.

Finally, back to the ‘Jibberly Ball’ and 50 years hence (for those of you who are still alive), I wonder what will be remembered from this time of Jubilee celebrations?  Will it be buildings that need refurbishment and modernising, will it be noisy street parties, family gatherings or soggy sandwiches?

Perhaps all of those things, alongside the profound voice of a 40-year-old woman who has left us a legacy of how to live, who found ‘so much to smile about in the sadness’ and who wrote a book entitled ‘How to live when you could be dead.’

Here at the hospice, we hear many similar profound voices, speaking of suffering and of struggles amidst love and joy. They offer us glimpses into something that is, quite often, beyond words.  They speak of the uniqueness of the human spirit and the wonder of love and we as staff continue to be thankful for every remembrance of them.

Christa Friend

Supportive Care team, North Devon Hospice