Nothing has carved my identity more than Red’s Diagnosis Day.
The clear distinction between our old “pre-diagnosis” life and our “post-diagnosis” selves is so dense, so thick; completely palpable. There was the life before her disease and this life, ever after. There is zero ambiguity in the ending of one life and the first breath of another.
The day I died was Thursday, October the 6th, 2011 at approximately, 4:30pm.
My pre-diagnosis self was reduced to atoms, simple elements and compounds. Not in a violent way, to the contrary, it must’ve looked quiet beautiful. To see the clear ending of one thing and the pure genesis of another. The oxygen, carbon and hydrogen making me, was permanently fragmented and sent off course into the night sky, towards a star which happened to be colder, less stable and in the darker limits of space.
It’s no surprise that parents of ill children often describe feeling LOST and ALONE.
My most courageous friends and family cautiously asked me “what was it like? hearing her diagnosis.”
Ultimately, the experience of D-Day isn’t transcribable. The best I can do is equate it to a car wreck:
When a car is crashing, it squeals and swerves before the IMPACT when glass shatters, metal scraps, fiberglass pops and gases hiss. The wreckage, as it is deconstructing, scores an eerie mechanical orchestra and then, there is a curious kind of SILENCE.
The pause of wreckage, amounting to milliseconds and blinks, holds every dyadic relationship you’ve known: it is impossibly slow yet gone; it marks your death with reluctant life; it devastates to rebuild and dismembers you into completion.
Before the screams, before the sounds of survivors escaping and whaling, before the sounds of bystanders yelling and scrambling, there is a cumbersome and winded moment as though God himself were holding his breath with fingers crossed.
It’s this sort of silence, in the immediate aftermath of tragedy, that holds truth to the experience of being told that your child has a rare, progressive disease that may take her life.
And in that moment which is already gone, you’ve died and been given new life. Quite simply, D-Day has been the greatest horror and happiness that I’ve ever known in my 33 years.
Emily Rapp, used T.S Eliot’s notion of THE STILL POINT OF THE TURNING WORLD to describe her son’s progressive and fatal disease which would inevitably claim his life.
It goes, so perfectly:
At the still point of the turning world. Neither flesh nor fleshless; neither from nor towards; at the still point, there the dance is, but neither arrest nor movement. And do not call it fixity, where past and future are gathered. Neither movement from nor towards, neither ascent nor decline. Except for the point, the still point, there would be no dance, and there is only dance.
T. S. Eliot
The experience of having your child diagnosed with a rare disease is housed within the Still Point of the Turning World. For all the loss, all the grief and pain, simultaneously there is joy, reverence and love to heights I’ve never known. There is no life, and there is life being lived so rigorously that it makes you … marvel.