Age 12 Stacey Pidden was diagnosed with Pulmonary Hypertension (PH) and given a couple of years to live unless she went on a new trial drug which, with her parents behind her, she did. A decade later and she was given two years to live and put on the waiting list for a double lung and heart transplant - that was three years ago. She blogged her story to us students here at the Open University from 2011, then a couple of years later started her public blog. One friend with PH stopped taking drugs and died. She shares everything openly and honestly. From age 4 she underwent heart surgery and had a couple of operations every year or so. What is immediately apparent in blog is her skill as a writer and her view that “life is worth fighting for.”
Stacey is a feisty and determined and would be far weaker had she not found her voice and even a purpose in life: she is the voice of a new NHS donor card campaign.
Doing the FutureLearn course 'Medicine and the Arts' we hear from Marc Hendricks who express concern that children’s voices in medical institutions have been marginalised.
I see value in blogging as a creative outlet: it combines so much that the University of Cape Town team addresses in this course: giving young patients a voice - their voice, in a way that suits them.
Tracey, for example, is in close contact with the 17 other in the UK waiting for a double lung and heart transplant like her: this empowers her and reassures her - there are other people in her situation and she has a voice that requires no filters. Susan Levine in 'Medicine and the Arts' talks of a person’s life world.’ Tracey shares her ‘life world’ with us; whilst we may think of our community as neighbours and friends, hers includes her transplant team and regular consultants. A blog is text, voice, photos, artwork and even song; whatever the author wants in fact. It’s certain than visual metaphors as Kate Abney in 'Medicine and the Arts' found are an important way to express meaning too. While hospital radio is another way to enable storytelling as Nina Callaghan from in 'Medicine and the Arts' has found.
Creatively Stacie is a erudite, witty and frank voice representing those waiting for a transplant. Where permitted, children, not just young adults, should be given such freedoms to communicate and share beyond the confines of their ward and so give them confidence to speak their minds, improving their lives, their motivation to live and the quality of communication with hospital staff.