Before we move on from Father’s Day, a personal reflection from Jeff Dean. Jeff’s father died on April 10, 2012 and this piece was written in early March.
My father is dying.
There is, of course, a certain literal sense in which all of us are “dying,” but the vast majority of us haven’t been told precisely how inevitable our death truly is.
My father has been dying for some time now. He was diagnosed with Parkinson’s Disease on Good Friday of my senior year in high school. Parkinson’s gradually shuts down the brain’s ability to coordinate movements by the muscles. No one realizes how many movements the brain is constantly, quietly orchestrating. My father noticed the loss of his fingers first. I noticed only what he noticed when his guitars began to gather dust and music left our house.
Parkinson’s progression follows a predictable path. We know and have known for a while what would likely happen. My father’s throat will close.
Have you ever thought about swallowing? Food doesn’t just fall down a pipe into the pit that is your stomach. Food is moved deliberately down your throat by a series of complex muscle contractions that occur entirely outside your conscious awareness. While you are taking your next bite, your brain is commanding your throat to snake your first bite gradually downward. The signal from my father’s brain no longer reaches his throat. His food does not go down. He can no longer eat.
He can’t drink, either. The throat is very reluctant to allow anything in when it hasn’t received a signal to push it down. So a liquid diet isn’t very effective, either. My father is starving.
The disease closed in on him from his extremities inward. After his fingers, he lost fine motor control of his arms and legs. When he came for my college graduation, he could barely stand for the pictures. He fell twice on rainy sidewalks and asked me to tell my roommates how strong he had been before the disease took him over.
I’ve had a tough time believing in God since college. A therapist once blankly said that I was grieving my father’s protracted convalescence. I know that’s true in a way. A person feels profoundly alone when his father is taken by disease and his mother is taken by care giving. There doesn’t seem to be anyone to turn to. The people who fixed everything can’t fix anything anymore. Nothing will “be alright” unless I make it alright. A very strong and capable father makes belief in a very strong and capable Father much simpler. The provision of the latter is manifested in the presence of the former. How can a person be anything other than agnostic as to whether an all-powerful Provider exists when the only provider you’ve ever relied on loses his ability to feed himself?
Have you ever changed your father’s diaper?
My father has a living will. He has refused a feeding tube. The doctor at the nursing home said that a feeding tube will become a “medical necessity” within two weeks. When my brother asked my father if he wanted the feeding tube, my father cried. My father once punched a man for whistling at my mother. My father built the house I grew up in with his own two hands. My father negotiated 20% off the asking price of and refused to pay for “undercoating” on the car I still drive every day.
If anyone has ever suggested to you that religion is a comfort to the dying and to those who will remain after the dying have died, I can assure you that this idea is completely and totally false. The frail hope of eternal life pales in comparison to the bludgeoning immediacy of impending death.
When Martin Luther reached the top of the Scala Sancta after praying on his knees across every step, he was assured that his grandparents had been released from Purgatory on the basis of his good work. He is said to have stared into the distance and asked himself softly, “But is it true?”
I know my father wonders that. To sign a living will is no difficult undertaking on a beautiful spring day when death is a mere abstraction. “No extraordinary measures! No ventilators! No feeding tubes!” But when a feeding tube is all that separates a person from entering an unknown finality, drifting in on the tide of starvation, the hope of a few more weeks of certainty becomes somehow tolerable. A constant dull pain in the throat? Loss of the simple joy of experiencing saltiness, sourness, sweetness? Loss of the ability to speak or to hear the sound of your own voice, ever again? At least these can be contemplated, however fearfully. How do you even conceive of your own death and summon the courage to make a choice that will let it happen?
Everyone dies alone. You may be surrounded by family, or your may slip away unexpectedly with no one by your side. In the birth of every person was a mother’s participation. All of us were brought into the world through someone else’s labor. No one imagines his arrival while resting in the womb and then bravely confronts crossing into the unknown world. But death? Death comes like a thief in the night and promises to take us some place and never warns us what that place will be. Torment? Bliss? Nirvana? Oblivion?
“Oh death, where is thy sting?”
The sting is watching fear in my father’s eyes when a doctor lies to me and assures me his dementia has advanced to the point that he doesn’t know what is happening to him. The sting will be when the fingers that long ago ceased to play Hank Williams and Johnny Cash on a Martin D18 will go slack in my hand. The sting will be when my mother goes limp and cries out in anguish over the end that we all see coming but can never be prepared for. The sting is the sound of heavy dirt on a hollow box and knowing that the man who used to read me Dr. Seuss and rent me Disney movies on Friday when my mom worked late at the bank and he had to pick me up from school, that the carpenter who once sold half his tools to buy me a bicycle when I didn’t understand why we were too poor for me to have one…is…gone. Gone where? Gone. Gone from everywhere. Gone to…where?
Peter is said to have asked Jesus, “Lord, to whom shall we go?”
I am convinced that if anyone has more than a modicum of comfort or certainty because of religion, then that person simply does not grasp the severity of the human condition. But somehow Peter’s words offer me something. Otherwise there are no promises, no admonishments, no signs, wonders, or visions that don’t evoke Luther’s question from me, “But is it true?” There seems to be an allowance, though. A concession? There is an old story about someone who accepts and can work with the fear and dread of a frightened person–a person who questions everything and arrives finally where he does for no other reason than lack of other escape.
My father is dying. There is no hope for him. There is no peace to be found in what very well could be fairy tales. But I have been told that Jesus does not turn away even those who come to him only hoping the stories might somehow, some way, possibly be true…and I don’t know of any place else to go to escape the finality I see with my own eyes.
Maybe that is enough.
For my sake and the world’s sake and mostly my dying father’s sake, I hope that is enough.
COMMENTS
9 responses to “Thoughts on the Dying of My Father”
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I hesitate to add anything to this most Christian act of honesty. Thank you, Jeff, for giving voice to my own fears (and surely those of others). Many thoughts and prayers coming your way in the coming weeks.
My own father has Multiple Sclerosis. We played karate in my back yard with him as a kid, and now every few months when I get to go home and see him he’s aged what looks like years, using a cane, then walker, then electric scooter. Thanks for writing Jeff- “we are all beggars, this is true.”
My father passed away over 7 years ago. It’s hard to believe that it’s been that long. I miss my Dad. I always will. My prayers are with you as you mourn. My prayers are with you as you hope, beyond all reason that the stories are true. Truly we are all beggars.
I am racked with sobs reading about your Dad, I lost mine to the same heinous disease 8 years ago.He too refused the feeding tube,He had not spoken in months and on his deathbed spit out the words” NO TUBE” ..it was the Holy Spirit for which I am eternally grateful…Jesus in HIS mercy was there through it all…Daddy was brave ,funny, handsome, and simply the most loving father imaginable and we lost him five years before he was dead.There are some things that are worse than death, but don’t seem so at the time…He is up there smoothing the way for us as he always did.
Much love to you and your mother in this difficult time.
Words fail me at the moment, Jeff. This is so honest it takes one’s breath away. Thank you for writing it.
There is nothing I could add or say to your article and the comments that have followed. I have been there too. You all nailed. Thank you.
I’ve been where you are. My dad died of Parkinson’s six years ago. Thank you for writing this. May the grace of the Lord Jesus see you and your family through.