Kent Gilges’ oldest daughter, Elizabeth, was born in 1993. She seemed to be progressing well, but then developed a tumour on the brain. At eight months she underwent major surgery to remove it. During this process she suffered a stroke; from then until her death in 2004, she was never able to walk, talk, feed herself or even smile. In this poignant memoir her father pays tribute to a “tiny, insignificant, monumental life”.
Gilges’ wife, Liz, is a woman of strong faith. He is not. A graduate of Cornell and Oxford, he was not prepared for the shock of his daughter’s condition and his book describes his struggle, shared by all who do not have religious belief, to understand the point of her short, often suffering, life. Elie (as she was known) was never able to lead anything remotely approaching a “normal” life. Everything had to be done for her; she required 24-hour care. At first Liz Gilges attempted to do this on her own with family support; later, as she and her husband became aware of the extent of their daughter’s disability, they were helped by a team of devoted nurses, so that Elie could live – and eventually die – at home, surrounded by loving care.
Her father, who does not tell us in the book if he came eventually to share his wife’s faith, nonetheless is open to the painful mystery of this misfortune. He does not ask “Why us?” but accepts – though he cannot understand it – that “there is a blessing sent from God in every burden of sorrow”. If this sounds like religious language, it reflects what one of the paediatric neurosurgeons told them: “There are no atheists in the paediatric neurosurgery waiting room.” In the extremities of sorrow, the human spirit is forced into language and categories beyond itself.
Ironically, the Gilges had accepted that their daughter would die of an inoperable tumour and were at peace with this decision when they heard of a surgeon who performed seemingly miracle operations. The hope this gave them was short-lived. He agreed to operate and it was a success – until post-operative trauma made their daughter more incapacitated than formerly. Yet the operation also prolonged her life. From then on, until her death 10 years after, a feeding pump was Elie’s constant companion. During a pilgrimage to Lourdes, where they were unable to recharge the battery of the pump, the Gilges had to feed her from a syringe, one millilitre per minute, 24 hours a day. They were exhausted; meeting other parents over the years in hospital wards and waiting rooms Gilges notes that they “all show in their faces that they are collateral damage” in the war to sustain their children’s lives.
Yet Gilges also observes how Elie, by her very helplessness, attracted help from others; her spiritual family grew ever wider as she touched the lives of strangers; without being aware of it she brought out the magnanimous, tender and heroic features of human nature in those around her. This, her father slowly comes to realise, is the “meaning” of her life. It does not, however, shield the family from pain; what little hope they had clung to was swiftly demolished by a doctor who told them bluntly that “major parts” of their daughter’s brain were gone, adding that she would always remain in a persistent vegetative state.
Such a notion is roundly rejected by the author; Elie was not a “vegetable”; she was a person, alive and in some indefinable way, aware: “She does communicate. We know it and the nurses know it,” even if only through a slight sigh. Thus, what might have seemed a burden was transformed into a gift. Her family and carers helped her physically; and Elie, by bringing out their self-sacrificing qualities, “touched us spiritually.” Indeed, as their worst fears about her disabilities were realised, her parents never wavered in their belief that the gift of life is “profound and worthy of reverence.”
In the current debates about the “worth” (or not) of human life, when illness or old age make it seem unproductive and useless, this text – and similar testimonies should have a foremost place. For those privileged to know her, Elie led a life rich in significance – and who is to gainsay this?
Francis Phillips is MercatorNet’s regular book reviewer. She has two children of her own with special needs.