The Fight of Our Lives

As someone who has witnessed prolonged terminal illness as it gradually diminishes the life of loved ones, I have seen the way that dying people hang on to life; I have seen what it takes for them to let go. I have also seen how the promise of medical advance entices and further complicates that process of acceptance. Denial may seem harmless to some and may even be deemed an appropriate coping mechanism by others but the refusal to accept is detrimental.

This level of denial renders daily care, doctor-patient conversations, and treatment decisions much more difficult than they already are. Desperate patients cling to life-sustaining treatment even as it destroys their quality of life. Some doctors will continue to offer treatment as long as the patient is willing to endure it. The patient and their families exist in an emotionally painful and physically exhausting state between denial and acceptance with the long-shot hope of a cure always just out of reach like a mechanical rabbit on a dog track. And they run after it on and on into futility.

Extraordinary Measures is the story of John and Aileen Crowley, determined parents of two children who have a rare glycogen storage disorder called Pompe Disease. The Crowleys, faced with the dismal life expectancies of their children, partner with a research scientist to form a biotech corporation and develop a treatment. The film follows the family’s journey through many discouraging turns until a drug enzyme is developed and brought to market.

These questions: what lengths will parents go to for their children and at what costs? are considered in at least two other contemporary films. In the similarly titled 1998 action movie Desperate Measures, Frank Connor obtains the only matching bone marrow transplant for his son but in doing so destroys his career, endangers innocent civilians and police, risks a more violent death for his son, and nearly allows a convicted killer to escape. The child lives but at what cost?

In last year’s My Sister’s Keeper, the Fitzgeralds have a second daughter by in vitro for the express purpose of having a genetic match for their daughter who has a rare form of leukemia. The younger daughter later sues them for right to her own body but only does this for her sister who wishes to die peacefully. Her parents only understand and accept this wish after many traumatic months in court. All of this struggle and the child still dies. I get Ecclesiastical just thinking about it. Then I remember something else the writer of that book said, “There is a time for every purpose under heaven: a time to be born, a time to die…a time to fight and a time to surrender (Ecc. 3:1-2,8).”

Extraordinary Measures ends on more of an up-note than these. The enzyme is available in time that the children can begin treatment. Their lives are saved. Thousands of other children are spared too as a result of the breakthrough. This would not have happened had the Crowleys not been so persistent. Indeed, there is a time to fight. I worry though that many people only know this single mode of operation. What happens when they need to let go but do not? Their suffering increases.

As a caregiver, I have watched the dying cling to their lives with weak hands. I have winced while they struggle and in those moments I want only that they can accept so that their pain would diminish. After seeing these events play out for months, all involved parties grow weary. In our weariness, we cry out for mercy. In our exhaustion, those cries may sound cold and unlike us but they are in fact measured. We have counted the cost. At that point, we can no longer fight. We are ready for surrender.