When Dante and Virgil arrived in Hell (chant III of Dante´s Divine Comedy), they found the line “Lasciate ogni Speranza, voi ch´intrate” (all hope abandon ye who enter here-as translated by Henry Francis Cary-) carved in the gates of Hell. I always thought it was the phrase for the new arrivals, a sort of “Welcome to Madrid” or “Thanks for visiting Colorado”. However now I know it is not a location signal but it is the true definition of Hell.
A letter from Aurora
Some months before my son was diagnosed with Menkes I thought that the torture of Hell was a price for our evil behavior. My imagination still pictured it as the chaos and anxiety showed in Bosh´s painting of Hell. However, now I know that Hell is living in the absence of hope. I am forced to accept that my gorgeous baby boy will not survive, that science doesn’t know enough about him and others like him and that doctors can only help him to die.
These days I often think of one line J.M. Onetti wrote in his novel “A brief life”: “The issue is not that life promises things that never give us; the evil point is that life always gives them and later, takes them away”. However, it feels like my son was always there, as if he always existed.
The lack of hope impregnates my flat as a fog. It is a sticky silence that my husband tries to cover with the sound of the television; it is the discomfort that pushes every visitor away. This fog is only cleared when my son is awake because his joy is able to break through it. He is the rainbow in the mist. I am sure demons fear babies like my son because they make this world much better.
Hell is not the absence of God, because, as Father Erik says: “There is no doubt this baby is full of grace”. In fact, I have never been so close to God, as I see Him in every smile, even in every cry, in every bit of my child. My baby is a miracle that just needs a bit of science insight to remain with us.
Mankind has been able to step onto the Moon, has been able to build the pyramids, regularly performs liver transplants but is not able to put copper in the brain of a baby. Whenever life becomes realistic, it often reaches pure surrealism. Yet, a few scientists, just a few, haven’t given up, though they have scarce means, and if they find the cure they will never become rich or recognized by society.
The only way to combat Hell is by not accepting the unacceptable. The antonym of despair is persistence. The hellish status of this disease must change, and all of us, even those who have just read these lines, are called to it.