FEATURE: Sudbury woman charts battle to come to terms with breaking neck
It has been an interesting journey, but not the best one. With devastating understatement, that is how Marion Blower describes the last five years.
On March 30, 2013, soon after she retired, Marion and her husband Bryn were packing to spend six months at their second home in Spain.
As she carried a bag of clothes down the stairs, her foot slipped. She fell and broke her neck, crushing her spinal cord.
From that moment, she was paralysed from the chest down. After a working life spent caring for others, she now needs 24-hour care herself.
Marion used to be manager of Sudbury Resource Centre for adults with learning disabilities.
She also managed adult home care services. Off duty, she was an enthusiastic helper at community and fund-raising events.
After her accident, an appeal led by the Suffolk Free Press and Sudbury Town Council raised £14,000 to buy her a powered wheelchair.
Now, three years after leaving hospital, she wants to share her experiences with those who donated and helped her and Bryn through the darkest times.
“I want to say thank you again to the people who supported me in my hour of need,” she says. “We were both so grateful.”
And she is also keen to promote a fundraising effort for a charity which has supported her and numerous others with spinal injuries.
Learning to live with such severe disability has tipped her between hope and despair, and she does not try to hide how difficult it is.
She loves to talk, and keep abreast of the news, but it hurts having to observe rather than take part.
With nine children, 17 grandchildren and 14 great-grandchildren between them, family is hugely important to her and Bryn.
And it saddens her that she can no longer join in their celebrations in the way she used to.
Nothing is easy now. There have been many setbacks, and shocks that some things you would expect to be provided are not.
Marion, now 65, had an initially-successful operation on her neck at Addenbrooke’s Hospital.
But the fixing broke, and it was too dangerous to operate again.
“I have to be honest,” she says. “I sometimes wish I had died at that time because life can be such a struggle.
“From being a carer and caring for people for 33 years to having to be cared for yourself is such a transformation.
“You try not to feel sorry for yourself but there are times you just want to give up.
“At the very beginning in hospital, I used to ask Bryn every day to just put a pillow over my head.”
She was moved to intensive care at West Suffolk Hospital, then transferred to the Princess Royal Spinal Injuries Unit in Sheffield where she spent the next 16 months.
But when she left, it was quickly apparent her battles were only just beginning.
There were many struggles to get the highly-specialised 24-hour care she needed, which is financed by the NHS.
“Coming home was an eye opener to what is available in the community,” she says.
“It was only because I knew how to access things for clients when I was in the care sector that I had the knowledge to help me through.
“In hospital, all the facilities are there, but you come out and you have to fight for things.
“You never totally come to terms with what happens when your life changes within seconds. Since I came home, I have had no psychological support.”
Accepting the changes in her body has been incredibly hard. “The person I was is dead,” she says,
But she adds: “This has been my best winter since I’ve been home. The doctors’ surgery and district nurses have been brilliant.”
The couple live in a two-bed rented bungalow. They cannot yet find a suitable three-bedroom home which would enable her to have a live-in carer.
Instead, a rota of support staff work two at a time. One is always a nurse.
Marion has a permanent tracheostomy in her throat, and at night she is attached to a ventilator to help her breathe.
There is at constant risk of choking, so she can never be left alone.
Doctors told her she should stop eating, and rely on being fed through a tube into her stomach. That is what happens at night, because she cannot eat enough in the normal way.
But she refused to give up, and hopes a swallowing test this month will change the advice. “Meanwhile, I’ve had to sign a disclaimer that I’m eating at my own risk.”
She also defied medical opinion that her leg should be amputated below the knee when her ankle was broken.
Her foot may have caught on a door frame at home, but, because she has no feeling in it, she cannot tell how it happened.
Marion has learned to use her computer with a special pen fixed into a gripper attached to her hand.
She can write her name by holding a pen between her index finger and little finger.
She can pick up a glass using both hands and, with a little help, do her make-up.
“I’m amazed at the things Marion can do having seen the journey all the way through,” says Bryn, 74, who Marion refers to as her rock.
Bryn had a stroke in 2016 brought on, they believe, by stress after a breakdown in care cover when he had to spend 36 hours caring for her alone.
He admits it can hurt to see other couples out enjoying themselves like they used to do.
They rarely go out, although their car is adapted so her wheelchair can replace the passenger seat.
“Access to places is a huge issue,” she says.
Her powered wheelchair is bigger and bulkier than a normal one.
“One of the worst things is access in shops. Often you can get in, but you can’t get round because displays are so close together.
“There may be a ramp up one side, then you have to bump down on the other side – I shouldn’t be bumped around because I still have a broken neck.”
They stay in touch with friends they met at the hospital in Sheffield.
“They are our salvation,” says Marion. “They are the only people who really understand what you go through.”
But staying in a hotel for their occasional reunions is a massive undertaking.
Where Marion goes, her support staff, medical and mobility equipment must go, too.
“I have an entourage like a celebrity,” she says.
“I’m supposed to have at least two staff, then there is all my equipment, including the ventilator and a hoist.
“We still have our home in Spain and I am desperate to go there once more.
“But the thought of getting on an aeroplane like this ... my chair is too big to go on a plane. I would have to be manhandled into a seat.”
Sometimes, dark humour is the only thing that gets them through.
“I never need to buy new shoes now, I never wear them out,” she says, wryly.
Marion has received vital advice and support from the Spinal Injuries Association.
In July, some of her helpers are taking on the Tough Mudder challenge to raise money for the charity.
Anyone who would like to join her fundraisers on their challenge can email Marion at email@example.com. Sudbury company DaRo is sponsoring their effort.