Last week Ruth Spurr, who is part of Living Life to the Fullest’s Co-Researcher Collective of disabled young researchers, spoke at an event called, Questions Worth Asking, hosted as part of the Speen Festival, 2019.
The event centred on a series of speakers answering a key question related to their lived experiences. The question Ruth answered – to an audience of over 150 people – was, What do you do when your full time job is coping with a life threatening illness?
This question is really prevalent in the lives of disabled young people living with life-limiting and life-threatening impairments (LL/LTIs). The lived realities of illness, progressive conditions, and regular hospitalisations and appointments is something that young people routinely negotiate in their everyday lives.
Ruth’s talk was powerful in inviting the audience into her experiences – she articulated messages of determination, hope, vulnerability and her own approaches to managing her feelings towards death, dying and fragility.
In Living Life to the Fullest, through our interviews with young people living with LL/LTIs, we found that death and dying was something very important to speak about. All of the young people we interviewed spoke of a strong desire to live life to the fullest, despite the possibilities of shortened life expectancies. There was a consciousness to wanting to “cram” life in; to make the most of life. Some told us that they doubted health professionals’ perspectives about life expectancy and that “goal posts” about life expectancy were often moved by health professionals as young people aged. For some young people, this meant living in a ‘liminal’ space where they had little knowledge of how long their lives would be. For some, this eventuality impacted life planning, particularly their thoughts about having a family. However, importantly, legacy – being remembered and leaving something to the world – was very important to most of the young people we spoke to. Young people wanted to be remembered by family, friends, and their communities, and often take different approaches to legacy-building.
Speaking about the event, Ruth said, “I was really nervous but I’m really proud of my speech and at the end I got a standing ovation from the crowd which I wasn’t expecting and nearly brought me to tears! I was so overwhelmed but so overjoyed too. I love public speaking so much, it’s one of my biggest passions as well as grasping opportunities and living life to the full and along the way spreading happiness, love, inspiration and the little joy of appreciating the little things we can in life to all those I can around me”.