The funeral of Shirebrook’s standout musical genius took place in her parish church yesterday (1st February). Over 150 people packed the pews at Holy Trinity Church in the former Derbyshire mining village to say farewell to Kara Jane Spencer, our much loved musical star.
After the limpid notes of her signature tune, ‘Baby Breathe’, had hung glistening in the cold air of the church, the congregation belted out a rousing ‘Amazing Grace’. A preacher from Clay Cross Community Church a few miles down the road then told us more about this remarkable 32-year-old.
If you thought you knew everything about Kara from her ‘It’s Still M.E.’ album delivered to the world in 2020, think again!
Ken Allen said Kara had probably lived with M.E. all her life, although the physical symptoms had only really kicked in from the age of eight. By the age of 16, she had taken to a wheelchair and had recorded her album after she could no longer get out of bed.
She was born “with the wisdom of a 50-year-old”, had ruled the roost at home and even taught her own mother to cook. She developed a deep faith in Christ and was baptised 15 years ago this month, taking this step with both her mother Jenny and her sister Emily.
Music, drama and the arts were vitally important to Kara. She distinguished herself in these areas throughout her school years in the village where she was born, then at Chesterfield College before going on to Edgehill University at Ormskirk in Lancashire where she studied English Literature and Drama.
In her second year at Edgehill, she won a £1,000 Jesse James Scholarship for her work there on diversity and inclusion.
Mr Allen said: “She would not allow her illness , however debilitating, to prevent her from living her life to the full. ‘Have wheelchair, will travel’, was her motto!”
She’d been a performer, choreographer and director with performance groups in Mansfield, Nottingham, Chesterfield and at Edgehill. She enjoyed trips away using money saved from her disability benefits – to London, where she once dined at a Gordon Ramsay restaurant, and also abroad.
She fell in love with a young man called Lee, who was blind and who sometimes travelled with her. What one lacked in a particular ability, the other more than made up for. “I think it fair to say that, had it not been for Kara’s complex medical needs, they would have married,” said Mr Allen.
Wherever she lived, Kara played a full part in the life of the local churches. She had a special rapport with children with special needs and with adults with challenging behaviour.
When she wanted to strike out on her own after university, she told her family that – whatever their worries about her – it was to be on her own terms. At first, the council in Lancashire refused to consider her for a flat, so Kara staged a battle royal with them in the press and elsewhere.
Eventually the council caved in. But, while Kara was waiting to be allocated her own flat in Lancashire, they put her up in a halfway house for recovering drug addicts.
She made the most of it – making friends with the other residents when she cooked for them on her first night there. They were sad to see her go when she did move on.
She eventually settled in her own bungalow back in Shirebrook – the village where she was born. “She wanted family to be family and not carers. Her desire was that she should get on with her own life so her family could get on with theirs!”
Her album, as we all know, was recorded from her bed and then released on Severe M.E. Day in August 2020. Mr Allen said she had reached out to one of her musician friends, who took on the production responsibilities. Her intention was to raise £100,000 for a tissue bank to enhance M.E. research.
“The shadow cast by Kara’s short life touched many people’ said Mr Allen. Her life had been characterised by “love, commitment and constancy.”
After the service, she was taken for cremation in a simple wicker casket covered by her favourite white and purple flowers. The family – mum and dad David and Jenny, and her siblings – then joined mourners for the wake in the Shirebrook Miners Welfare Club.
Kara had been recording songs for a second album called ‘In Limbo', which will be released later this year. The proceeds from album sales and streams will go towards Kara’s Fund to reinvigorate post-mortem research into M.E. Please donate at the link below.
To watch yesterday’s service, which lasted less than an hour, please click on the separate link.
Tony Britton
Senior Fundraising Consultant, The ME Association
tony.britton@meassociation.org.uk Mob: 07393 805566
