When I started thinking about Life Expectancy and the ways in which families are told they will outlive their loved ones; my interest fell on the stories.
I’ve found that many families want to know the prognosis… a plan and others don’t want to know at all. Then there are those families that are given a length of time by a medical professional without being given a choice whether they want that information or not. Of course, these conversations come after birth, trauma, surgery, MRI’s, test results, etc., but the shock and grief regarding the loved one holds tight no matter how the delivery occurs.
Our daughter had many specialists weigh in on her life expectancy. My husband and I wanted to know, we wanted to plan as best we could. In general, we were told that she would die by the age of three. The rare birth defect, prematurity, the disheartening news of her first MRI, the IV nutrition that was rapidly damaging her liver, constant surgeries and new diagnoses filled the first two years with our precious baby. When she turned three we took a deep breathe and keep pushing forward. Who was that person that said three would be the end? It doesn’t matter now. We are proud to say that Caleigh turned TEN last August.
What allows or leads a medical professional to put a number or future ability on a life? It could be experience, research or ego. It could be the certainty of a diagnosis or a way to lead the family towards preparations and letting go. My quest isn’t to find out why the life expectancy was given, my interest lies in the families, the stories, and the journey.
Over the past year, my artwork has shifted toward a social practice, particularly involving others in the collection of materials or information. This practice involves the act of collecting and documenting through language and visuals. My recent projects One Day and Fundamentally Prime are examples of the collecting and collaboration with others. Of course, my heart is connected to the community of medically fragile children and their families, but there will always be a larger story to tell.
So what is your story? I’m collecting the life expectancy estimates that you were given regarding your baby, child, husband, wife, daughter, son, mother, father, etc. Tell your story or memory and it could be included in my new book and art project Life Expectancy.
For more information: firstname.lastname@example.org or hollydgray.com