"Left with a trace of all that was, and all that could have been"

My father has now survived one year and one month. Thirteen months since a diagnosis that was tantamount to a death sentence. Cancer so severe and widespread that several doctors said treatment was futile. While his survival is, in and of itself, nothing short of a miracle, it is not without it's price. People on the outside marvel at his resilience and determination. They hug me and say we're all so lucky that he's still here. And I wonder how I can convey the toll it has taken on all of us, without seeming ungrateful.

I have continued to lose my Dad in chunks. Cancer his been chipping away at him for a year, and he is nothing like the man he was a few years ago. His intimidating intellect, gift of writing, as well as his ability to see the world through the camera eye, has all fallen away. He has lost his autonomy and free will. Mom and I have watched, helpless, as he has slowly lost everything that makes him who he is.  Backpacking, photography, writing: all things tied into the fabric of his identity. All things he is unable to do.

I can remember watching him in the darkroom as he developed photos. Standing on a chair so I could see, leaning over his shoulder and watching, fascinated, as he'd create this perfect image out of nothing. He'd talk about light and darkness, shadows and timing. He'd always tell me that photography was half science and half art, and the trick to being really good was to balance the two. It wasn't until I was a teenager that I realized that not everyone's family albums were full of works of art.

                                                             Me, age 3, photo by Dad

People who meet Dad now, for the first time, think he's doing wonderfully. And if you didn't know him before, I suppose for someone with tumors in the brain and cancer throughout other major organs, he is remarkable. But I wish they could have seen him before. I find myself crying more for what could have been, for his lost talent and potential, for what we all could have had, what our family could have been. And it still seems surreal that it's all led us here. Addie asked me the other day when I was going to die. She's four, this shouldn't be high on her list of topics. And yet, there it is, we are all living with Death these days. I wanted to give her the kid brush-off answer, but she's too smart for that. All I could say was 'hopefully I'll live a long time. But I don't know. No one knows for sure. But we'll all be together in heaven someday.' 

We are all in a holding pattern. We wait, we hope, we live in isolation. And try as I might, I can't seem to make anyone understand that while my did is indeed alive - I am not getting 'more time' with him. The best parts of him are already gone.

"And happiness and peace of mind
Were never meant for me
All these
Pieces
And promises and left behinds
If only I could see
In my
Nothing
You meant everything
Everything to me"