What will survive of us is love.
- Philip Larkin, An Arundel Tomb
Charlie Gard is ten months old. His birthday is on August 4. He has Mitochondrial Depletion Syndrome, an extremely rare genetic disease. The syndrome refers to a group of disorders that cause a drop in mitochondrial DNA.
Mitochondria create more than 90% of the energy the body needs to sustain life. When they fail, cells create less energy, are injured and eventually die. Eventually, whole organ systems begin to shut down. Most affected are those that need the most energy: Charlie’s kidneys, his muscles and lungs, his brain.
Charlie has been on life support since October of last year. He breathes through a ventilator, sometimes he opens his eyes. He is loved by a mother and father whose names are Connie and Chris. They have been fighting to get him experimental treatment, in the hospital ward, on social media, in courtrooms. His doctors say the damage is done; his DNA cannot be repaired. The little boy cannot hear, move, cry, or swallow, and should be allowed to ‘die with dignity.’
There is no side for us bystanders to take in this debate. No black or white, wrong or right. No place for our opinions or judgment here; there is already too much pain. The discussion we should have is not one on life or death, but rather one on love. Not on the next breath, through a ventilator or not, but on this one, now.
There are 475 park benches scattered around London’s Hampstead Heath, each placed at an angle, in a spot that dictates the sitter’s perception of the landscape. Some benches are tucked away, others in plain sight right by the gravel path. Some are meant for solitary reflection, some for shared lunches, conversations. Some just to take in the sights.
People feed the birds on park benches, take naps, read books, wait, rest. A few moments then get up and walk away, walk on. The benches remain. They do not remember their sitters’ names and stories, but that does not discount the fact that once upon a time in this spot they existed; someone stopped here, breathed, sat.
To love what is mortal is to be set for pain. True love loves anyway, through the fight to survive and perhaps even more, when the time comes to let go. But if our lives are just moments stolen from time, like a few minutes on a park bench, how rich Charlie’s is, even on a ventilator, to be loved as he is.
On all 475 benches of Hampstead Heath are inscriptions on little plaques. Moments, entire existences immortalized by a name, a verse from a poem, a date. One day little Charlie and we will all die, whenever that one day will be, and if all that survives us is words carved on a bench, let them be:
We breathed and loved.