Like Bruce Willis, My Father Has Aphasia: This is What It Was Like for My Family
Bruce Willis announced that he’s stepping away from acting due to an aphasia diagnosis.
About 12 years ago, my Dad had a massive stroke. He was diagnosed, shortly thereafter, with Aphasia. Here’s a little bit what it’s been like for us and for him.
First, I’ll state the obvious: when it comes to matters of the brain and the human body, no two people seem to be alike. These are our experiences and in no way predictive of what the Willis family will go through or what Bruce himself will deal with.
Second: I’m far from medically inclined and I may miss on some of the details of his condition or get them wrong. I encourage all of you to go to aphasia.org for actual smart people saying actual smart things.
After a dozen years to look back, I’m just glad the stroke didn’t kill him. That the brain-seeking missile his body launched at him — the arterial dirty bomb that jammed it’s way into a clog, that prevented oxygen from reaching his brain for so long — didn’t end his life.
It’s not dramatic to say we’re lucky he made it through.
When I got to the hospital that day — he’d had a stroke in the night, after sleeping on the couch due to what we assumed were flu-like symptoms — he was initially doing okay.
He squeezed my hand. He talked to me. It was my Dad in the way that I remembered him, minus the staccato rhythms of heart monitors and the hideous gowns of the recently hospitalized.
I don’t remember what we talked about, in those small moments before things took a dark turn on the left side of his brain. Before the bruising and the swelling ramped up and everything changed for everyone in my immediate family.
I seem to recall sighing a bit in relief. Sure, they were throwing around scary, bleak words. “Stroke” etc. But to my college kid brain, it seemed like he’d made it through the slalom course his body had laid out before him.
I was wrong. The next day, at some point, my Dad — the guy who was always, always the sharpest dude in the room, but kind enough to not flaunt it; the guy who sang off key renditions of Broadway musicals he forced me to watch in a raspy voice — stopped talking altogether.
He didn’t start talking again, or making noise, for a very long time. A painfully long time. What felt like a fucking eternity.
He had tubes down his throat. My father — a videographer for the public television station here in Nebraska, who had swum to underground caves to get video of human remains & eaten raw buffalo liver during a sacred ceremony so he could get the best shot for a docuseries
that explored what life was like for Native Americans in our state, could barely squeeze my hand.
He always had something to say. And not just the usual, humdrum babble of small talk. He knew everything about everything. He could just as easily tell me about his trip backpacking through Egypt and how the pyramids felt when he climbed them (incredibly, a true story) but,
he could calm down my brother and I mid bro-fight, with just a few growled commands or make an angry drunk laugh when I accidentally walked in on him in the bathroom of a dive bar he’d taken me to to get me a burger.
That man, who did all of THAT. Who had been the narrator for so many chapters of my life, didn’t make a sound.
Eventually, he was moved to the rehab facility. His brain so swollen and hurt that I don’t remember how long it took before we were told — and immediately need to Google it — that he had something called “Aphasia.”
We’d honestly never heard of it. (I’ve still never heard someone mention it outside my family or the dedicated, heroic team who helped rehab him along the way, except for a random story by the Washington Post about Lamelo Ball’s Mom, of all people)
washingtonpost.com/news/sports/wp…
Eventually he was able to drink water, somehow managing to weakly smile at the diabolically thickened “liquid” that had the consistency of syrup so he wouldn’t choke on the life-giving substance.
Finally. Finally. After months and months of work and rehab and shell-shocked, head-tilt-a-whirling changes for my Mom and our family, he could make noise.
That’s what Aphasia does. It makes even the sound of your Dad humming sound like an opus.
He still couldn’t talk. We weren’t sure what all was getting in to his brain, but we knew he couldn’t tell us. His preferred method of communication was a staccato hand-squeeze, like 5-fingered Morse Code.
Shitty joke from me? A smile and a hand squeeze.
Did he want more of that Godforsaken water stuff? Grimace and a hand squeeze.
Was he pretty fucking tired of not being able to ask the nurse to change the TV to ESPN? Eyebrow raise, hand squeeze.
It was a long, laborious process before he could say anything. At all. I honestly don’t remember the first thing they were able to coax out of his lips, the first syllables that were able to successfully navigate the suddenly malevolent hedge maze that is his brain.
But, because he didn’t give up? Because he worked his ass off? Because he had a team of people who I believe genuinely gave a shit about him and his recovery?
He eventually did.
Aphasia robbed him of his voice. But not his wits. It stole his verbosity, but not his intellect.
Somehow, against all the steaming pile of odds, it didn’t even take his magnificent sense of humor.
He wasn’t able to give a toast — something he was,and is still, renowned for amongst those who know him — at my wedding. But by then, a few years later, he had gotten enough of his voice back to repeat a short phrase of a few words back if you helped him through it.
My brother recorded him, one word at a time, as he said he loved me and loved my new wife.
That’s what Aphasia does.
It forces a person to use pointillism to make their masterpiece.
One word at a time. One small moment, punctuated by silence and immense effort.
I don’t know how he’s done it. But my father has never — never — stopped trying. He is constantly navigating his way out of that maze, those dark corners of the twisting, dead-end riddled parts of our minds that we’re blessed not to have to worry about.
Our son, our daughter, they still know their Grandpa. They know him one word at a time. They know him saying something he doesn’t mean, or struggling to find the right word. But, they know him. For that I am grateful.
They know his laugh, full and deep, and still ringing throughout the house I grew up in and where he still lives with a wife who loves him and constantly battles to help him live a life that he would have wanted, even all those years ago on that pyramid in Egypt.
That’s what Aphasia does.
But it’s not who my father is.
And, I’m here to tell you that it won’t be who Bruce Willis or Tina Ball or any of the 1,000,000 Americans afflicted with this are, either.
(One last thing, to inject a tiny bit of levity: here is my Dad, pretending to be Bruce Willis in the air-duct scene from ‘Die Hard’, during an insane family movie we made in 2009.)
