Shortly after the birth of our daughter Sarah I discovered that she has a rare genetic syndrome, called Apert Syndrome. My husband Ben and I heard medical professionals advising us about her potential “quality of life” in a pitying and almost belittling manner. It was as if we suddenly entered the realm of inferiority, because Sarah was somehow born “defective” according to societal standards. It’s true that we looked upon her with initial shock and even shame, because we didn’t fully grasp the gift we had been given through her life and, yes, her disability. Gradually, steadily, we not only accepted Sarah’s rare condition, but we embraced everything about her.
The truth is, we learned something that most of us have already internalized, at least on the pragmatic level – that every human life is valuable and beautiful. Even in the hospital, I knew the doctors had no way of predicting what Sarah’s – or our – quality of life would truly reveal in time. Only God knew that. In the unknown, the mystery, and yes, the agony of bearing a potentially onerous life, we had to accept at the heart level that God was beckoning us to trust Him and walk this enigmatic journey. We knew God’s plan was not for harm or woe, as Jeremiah 29:11 encourages, but rather to give us “a future full of hope.”
Author Jeannie with daughters Sarah and Felicity.
Sarah has been the reflection of that hope from the moment we locked our eyes with hers. Human reasoning predicts a life of suffocation and setbacks when one is disabled, but we saw in Sarah a life of possibility and resilience.
The movie, Me Before You erases the message that my family is desperately trying to share through our journey with Sarah’s myriad surgeries and specialized medical care. The concept of compassion killing isn’t new, however, but its modern resurgence chills me as I consider its implications upon people like my daughter and throughout society as a whole.
Nowhere in the movie is suffering presented as redemptive, which would necessarily draw the characters out of their despondency and into a place of meaning and purpose. When we view the human condition as intolerable and, in fact, so despised that it must be vanquished altogether, we gravely relinquish the chance for real interior change.
True “death with dignity” isn’t about controlling how and when we die. It’s not some sort of macabre or romantic version of love that isn’t love at all. Dying with dignity involves a necessary, daily self-abnegation in which we acquiesce our pain and travails to the One who knows all. Through our wounds, whatever they may be, God invites us to unite all that we endure with the Wounds of His Passion. When we do this, however we may fight against it or even despise the way it feels, we offer it as an act of the will, an act of love.
Heroic love means that dying may be a possibility, but not because of a genetic deformity or paralysis from an accident. We accept God’s permissive will without choosing to end our suffering, even if the motivation is out of a noble desire to absolve our loved ones from a lifetime of caregiving. I know Sarah doesn’t see herself as a burden, and that’s because she isn’t treated like one. The very underpinning of our family dynamic is that life – however flawed and scarred it may be – isn’t ours, but God’s.
What we give is everything, not through assisted suicide or eventually eugenics, but rather through the gift of self. This means that we are compelled to live, regardless of the maladies or afflictions that appear due to hard living or old age. We are driven to live out of respect for our own dignity (and that of others, too) and recognition of the Holy Spirit, whose very indelible imprint is marked on our souls.
Movies like Me Before You send an erroneous and frightening message to those who have succumbed to secularized thinking. It’s not difficult to believe that the “option to die” is a viable one when life becomes too intolerable for us or those who care for us, yet this option is really the culture of death masquerading as love.
Do not mistake this deception. Love never chooses to kill, whether it’s killing oneself or another. Love chooses to live and, in fact, cherishes life and all that life entails – the celebrations and sorrows alike.
I cannot pretend that our life is easy, because it isn’t. And I won’t glamorize anything about the very real and difficult daily monotony that often tempts me to despair. It’s easy to believe that life should be comfortable and that happiness is the highest “virtue” for which to strive, but what I’ve learned is the opposite. Life is about sacrifice, and when this emptying and offering of self is done with a pure heart, God multiplies the blessings that necessarily follow.
So we must all choose authentic love, which means that our hearts are constantly listening to the ways God is leading us on our own walk to Calvary. We cannot eliminate this journey of our own passion, which leads to death – literal and mystical – but instead we must remember that the suffering, the emptying, the dying leads to resurrection. That is our promise and our hope, the one to which I cling on a daily basis when I’d rather have a “normal” life, whatever that may be.
I am not fooled, but rather am saddened when I see books and movies that portray suffering as evil. It’s true that some suffering is a direct consequence of sin, whether personal or social sin. But cancer, genetic disorders, paralysis from accidents, etc. are not typically the result of sin. Sarah’s life was no mistake. I cannot believe that God wanted her to have her skull cut open at the age of six months, but I can believe that her suffering and ours has the potential to heal in a metaphysical sense.
Suffering, when tethered to the Cross, can heal. We must seek this type of love rather than the false and barren love that destroys. Only then will we become living witnesses of the beauty and gift that every broken or disabled human life has to offer the world. People like Sarah are necessary for society, because they bear the face of the suffering Christ who bore all for the sake of all.
Let us accept our nothingness so that God can become our all in and through us. Instead of living a life that speaks of “me before you,” let everything we are and do proclaim “you before me.”
Editor’s note: June is Apert Syndrome Awareness Month. To learn more, visit Mrs. Ewings blog, Love Alone Creates, as well as her facebook page.
image: Arena Photo UK / Shutterstock.com
