Note to Self: Our Symptoms Do Not Define Us
Spending time with my father, I’m reminded that many people with illness and disabilities are treated like a list of symptoms and treatments. This holiday, my wish is that we look at and honor the whole person.
Through the years we all will be together, if the fates allow,
Until then we’ll have to muddle through somehow,
So have yourself a merry little Christmas now. – Ralph Blane
Writing my last post — in which I help a nurse tranquilize my 86-year-old father when he had become violent due to his ongoing struggle with dementia — left me unsettled. Dad’s condition since his brain injury has rocked him and our whole family, especially my 88-year-old mother, who I know can’t help but mourn the emotional — if not physical — loss of her one true love even as he sits dozing beside her. Putting all of that into words, trying to understand what I can from the event, is often like reliving each moment all over again in slow motion.
But what’s been most unsettling is a sense that in my heart the dad of the injury, confusion, and anger had pushed out the dad whose courage, depth, and insight flat-out blew me away for 60 years. Somewhere in the middle of these difficult few months, what happened to my dad and the family crisis it brought on threatened the definition of this extraordinary man’s life.
A couple of days after I’d helped forcibly tranquilize him, I am on my way to visit Dad at the rehab center to prepare him for transfer to a facility that can handle dementia, in the hope that with the right meds, he can eventually improve enough to go home. I know that his impairment will only let him see this as another prison sentence, so I’ve spent the past night preparing a bribe of sorts — a cobbler I made with Georgia peaches.
I find Dad in the physical therapy room, depressed, medicated, and unwilling to do his next set of exercises. He nods and gives me a half smile as I sit next to his wheelchair. He eyes the plastic container and spoon I’ve brought.
“What do you have there?” he asks. “More bad news?”
“No,” I say, opening the container lid. “It’s peach cobbler.”
“Is it poisoned?”
“No,” I say again. I pull out a spoonful for him, guiding it to his hand. “I made it myself.”
“So?” he asks. “What does that prove? You taste it first.”
“Sure, okay.” I pop the bite of cobbler in my mouth, swallow, and smile, licking my lips. “I gotta say, I’m one hell of a cook when I want to be. Here, your turn.” I load up the spoon and put his fingers around it. His eyes are on me as he brings the spoon to his mouth. But his hand suddenly shakes and he drops it.
“Damn,” Dad says. His eyes well up with tears. “Damn it to hell.”
I tell him that it doesn’t matter, that I’ve got plenty. But he shakes his head and says that’s not it. “You didn’t know I was joking,” he says. “You think I meant it about the poison.”
“No, no, Dad, I knew.”
But he can see the lie in my eyes and a huge sob breaks out of his chest. “I don’t think I can stand this, being this…” he says.
And then we’re both crying, leaning against each other, my arms around him. Holding him there I am taken back to Christmas 1957.
I am 8 and have discovered my present isn’t under the tree. It’s on a table next to the wall, covered by a white sheet. As happy as I’ve ever seen him, my father lifts the sheet to reveal an enormous castle made of grey metal painted to look like stones. It’s got a working chain drawbridge, towers, catwalks, little cloth flags, and a king, a queen, knights, and horses made of plastic. I can’t speak. I look at him and back at the castle and I know Santa has had nothing to do with this. In 1957, and in the future in 2010, it is the most stunning, meaningful gift I have ever gotten and my dad made it for me. (Later I’ll find out he’d stayed up all night putting tabs A into slots B and placing everything just so.) I look over again at him and my mother holding hands and smiling at each other. I want to jump over and hug him, but the moment is too good, and I don’t want any of this to change, ever.
In this blog I’ve often railed against those who would define me or my children by our ADHD instead of seeing the whole person, yet here I found myself doing the same thing — allowing the disability to become who my father is. When we think of quality of life, I think what we’re talking about is meaningful connection between people. The challenge facing family, friends, and caregivers of those with any type of disability or chronic ailment is to keep the whole person center stage — the rest is secondary. The problems, strategies, and medications are important, sure, but the human being comes first.
In the corner of the rehab center, my father and I finally stop sobbing. And wordlessly the two of us get down to the business of eating cobbler, sharing bites, touching hands. The rehab center speech therapist steps up to us as Dad and I, our faces still wet from tears, finish the last of the cobbler. “Are you two all right?” she asks, touching my father’s shoulder.
“Oh, fine,” Dad says. “Couldn’t be better.”
“We could use a tissue or two,” I say.
Dad nods. “This one has always been a crybaby,” he says. He winks at me, a tiny bit of peach drops off his chin, and we both break out laughing so hard we nearly fall out of our chairs.
So, though I’ll be with my family in Georgia this holiday season, my thoughts will also be with Mom and Dad. And I’ll wish a Merry Christmas to the dad who built a castle for me and filled it with loyal knights fighting for honor and true love.
Updated on October 9, 2017