By Cindy Millstein
Today I’ve been at a loss for words.
It’s the second birthday for my dad on which he has no voice. Last January 7, he was in the middle of nine monstrous months on (non)life-support technologies, cutting off most of who he was, and most especially his ability to speak, pun, play with words, argue, give advice, worry aloud, always have tidbits of news and history to share, schmooze with anyone and everyone. His eyes became his voice, but they were like a bullet-proof glass between us and the prison that his body had become — a life/death sentence. I saw so much sorrow through those eyes-as-voice, yet the saddest reflections through them were when I filled and refilled, many times, a bird feeder outside his nursing home window. No one else feed the birds. No one really visited the other trapped bodies there. So there were many birds, and each elicited the light of joy in those still-pained eyes, marking out for me how unable my dad was to fly away ever again into the beauty of the world. I always tried to smile back at him and those birds, holding back my tears and desire to scream or throw up until I left him.
This January 7, there’s a different kind of silence from my dad. He died on May 16, 2013, at a picture-perfect hospice, in a bed facing flowering trees filled with dancing birds of all colors, zipping and diving and playing around a multitude of bird feeders. We all loved those birds during that 8 days of dying well. Now my dad is truly without voice and without the accursed life-support equipment, too. I wanted to give words of who and what he was, words in my head that can make me see his shape, substance, and voice before his nine months of nonlife before death. Yet I can’t conjure language for that, because I seem unable to recall him before that time. It’s as if all the sorrow burned into me from his eyes also turned a lifetime of memories of him into ashes.
I want my own words back — the ones that can rescript the film loop of those nine months to include his many decades before that. I hate so much about the medical-pharmaceutical complex that thinks such technologies like trachs are the stuff of growth industries, for that perspective took my and my dad’s voice for the life that was before, imperfect as many pictures from his and my life together would be. But they weren’t pictures of silent suffering and eyes as prison bars.
A friend recently rejoiced that her uncle was on a trach and doing well, about to be moved to a nursing home. She was going to visit him in a few days. I nearly bite my tongue off trying to silence myself, yet silence myself I did. I wanted to shout at her and shake her shoulders, gently though firmly, warning: “That’s no life! That’s no home! Don’t do that to him! Don’t do that to you, either! All you’ll end up remembering is the quiet hell of a person who isn’t really themselves anymore, and the person you loved will be pushed out of your head maybe forever!” Her uncle died the next day, and I secretly thought it was a gift to her, despite the fact that it likely feels a blow right now.
I want next January 7 to be a day when I can again see my dad before he was something to be kept alive by tubes and machines and underpaid orderlies. I want that birthday gift for me: that his voice, and thus him the person, come back to life through and in me. I want to channel my words to break silences that mean families don’t get truthful words from doctors about ethical versus “medical” decisions until it’s too late, because I know my dad (the older one who I still can’t visualize) would want to help others avoid such needless suffering.
On this birthday of his, strange as it sounds, all I can say loud and clear is that I’m glad he’s dead and, though he suffered too long, glad he died well in the end. I wouldn’t say that about the healthy dad I can’t see, and hope to someday really feel the depth of sorrow at the loss of that other person I knew for years, the one who should have lived longer, talked more. The dad that illness and medical machinery made, however, is far better off away from the pain of that no voiceless not-life existence.
All I can offer him today is the remembrance of the hardness of his nine months, and all the grit and courage, strength and honesty he revealed, along with so many poignant smiling-eye glimpses of the flight of birds far freer than him and the pure pleasure he displayed in their pleasure nonetheless.
I love my dad. I want to start to know what it feels like to really miss the him that celebrated many happier, noisier birthdays before these two.
(This piece was written on January 7, 2014, and originally appeared on my Outside the Circle blog at cbmilstein.wordpress.com).