Facing Potentially Terminal Illness

By T. Johnson

“Stop it!” I scream, as he grabs my shirt collar and slams me into my bedroom wall so hard I see stars.

It’s the summer of 1984 and my father is on a rampage, another violent episode that drives him busting through my bedroom door like a mafia hit man. “This will teach you to ignore your mother’s call to dinner,” he roars, stomping toward my pile of precious Beatles records.

As he begins breaking them across his knee like crispy wafers, I crawl out from the corner on all fours, grabbing at his pant leg. I beg him to stop destroying that which I hold so sacred.

“Get off me, you good for nothing,” he hisses, shaking loose from my grip by kicking me in the chin.

Until late in the night I sit on my floor and weep over the jagged flecks of vinyl that hours earlier had calmed my long-terrorized soul. The dark eyes that flashed such obvious hatred for me and his most recent calling card left on my chin by the toe of his leather shoe finally drive home a truth I know but couldn’t, because of my helplessness and youth, act upon or admit until now: I’m no longer safe in my father’s house.

While my high-school classmates plan for college, I map my future that summer night. In three months, I’ll be eighteen. I can legally run wherever whimsy and fate lead, away from him. No college for me. No career path. No security. I have something better – the sweet freedom of escape waits.

For the next twenty years, I hop scotch to Dublin, London, New York, San Francisco. These are hard years, years of minimum wage paychecks, of weeping into whiskey sours when I call and my father recognizes my voice and instantly hangs up the phone. “Hi Dad, it’s ….” Click. Two decades of falling off bar stools as I seek redemption in dark, addictive places and in faces eerily familiar to the one who haunts my dreams.

I become drawn to those faces — men who are ghosts of my father. Their humiliating physical abuse, verbal cruelty, and foot-stomping demands that I grovel to prove myself worthy of their sadistic, erratic affections that I mistake for love draw me like a moth to a porch light flame. I can’t resist.

Then at age 38, the prodigal daughter returns home. I need to make peace with my haunted past. Not in my most vile nightmare did I envision the sucker punch that knocks me off my already precarious balance and ultimately helps me make peace with my past.

“I’m dying,” my father says one morning in March of 2004.

I fantasized about this moment for years. I dreamt about it in a cockroach infested eighth floor walk-up in New York City. I wished for it in a windowless bed sit in Dublin. Time and again, curled up fetal on secondhand mattresses, I lulled myself to sleep by imagining the terrain of a terminal illness — his. The death at the end of that illness brings closure. I conjure up scenarios of pale, hairy hands fumbling for mine between the side rails of a hospital bed. My abuser utters words of remorse just before flat-lining, words that finally set me free.

Now in the glow of the lamplight, these same hairy hands fumble for mine. I hear the words of remorse but they don’t free me.

“Huntington’s Disease,” he says. My scream sends my two cats streaking down the hallway. I know immediately what Huntington’s Disease means.

Born a Dylan fan bordering on a fanatic, I know all about Bob’s early idolizing of folk legend Woody Guthrie, and Guthrie’s pilgrimage to Greystone Psychiatric Hospital. Huntington’s Disease keep Dylan’s hero buckled down with leather restraints in Ward A while this progressive rare genetic disease destroys his brain, leaving him unable to walk, talk, or recognize the boy crouched beside him or the once-familiar dust bowl ballads Bob plays.

Thousands of exhaustive internet searches later, I learn that the earliest symptoms of the disease are psychiatric — violence, aggression, scapegoating, dementia. After so many years of being brainwashed into believing my father’s rage was my fault – caused by the worthless good-for-nothing daughter — this new information temporarily shelters me from the storm.

Then I learn that I have a fifty-fifty chance of inheriting this time bomb gene whose symptoms typically manifest in mid-life.

One hell of a coin toss, I think.

“Need to get yourself a DNA test,” my father says after he breaks the news. “Make sure you’re clean before I make out my Will.”

His words make me feel dirtier and more panicked than I’ve ever felt before. I don’t want to toss a coin on my genetic fate. The odds aren’t good. The only thing worse than having the disease would be knowing I have it. If you have the gene, you develop the illness. If you develop it, it runs a predictably brutal course. No more coin tosses. The chances are gone.

After weeks of gut-wrenching sobbing and nightmares that leave me drenched in sweat, I can no longer live without knowing if my body holds this gene. The time has come to give up my blood.

I call the doctor’s office an hour after having the test to beg him to throw out the tube of blood and cancel the test. “I don’t think you have this,” my doctor says, trying to calm me. “I think you’re going to come back clean.” My disbelief turns into trusting the doctor’s intuition. I let myself free fall into whatever destiny has in store.

But dread still fills my days and nights during the two excruciating weeks of waiting for the test results. I ride a rollercoaster of emotions, mourning my up-in-the-air fate and the fate of my father, who unintentionally mapped out my life for this misery. I long for the chaos of the past instead of this new crisis. I’d gladly trade hating myself and him for knowing he had Huntington’s Disease and I might too.

Symptom-hunting drives me crazy.

Symptom of Huntington’s disease: obsessive-compulsive behavior. I have it. Check.
Symptom of HD: rage. Who doesn’t have that? Check.
Symptom of HD: clumsiness. Who isn’t? Check.

As reckoning day draws near, I don’t need the diagnosis of HD to qualify for institutionalization. The stress of waiting readies me for commitment to any sanitarium. I fervently pray to my Higher Power for a sign to prepare me. “Just let me know, God,” I beg one night before falling asleep. “Let me know if I have this gene, and if this disease will destroy my brain and body.”

That night in a dream, I stand in an airport terminal staring out the window. I watch a plane head into a crash landing. I have x-ray vision that lets me see inside the plane. Doomed passengers clutch each other’s arms, screaming. My father, knocked around in the aisle, is a passenger on that plane. He’s heading towards his death. Never have I felt so helpless, so horrified. I press my fingers against the glass, bow my head, and cry.

When I awake before witnessing the mangled aftermath of the crash, I know my Higher Power answered my prayer. I wasn’t on this doomed aircraft. I don’t have this gene. But Life will force me to watch my father die in the genetic crash.

Knowing I can trust my vision, I ring my mother. With tears of hysterical gratitude, I tell her I’m negative.

“Just calling to see if my test reports came in,” I say when I calmly ring my doctor’s office days before the results are due. Somehow I know they’re there.

“Please hold,” the nurse says. The next five minutes feels like an eternity. Too much time passes. I can’t handle it. I start thinking and stop trusting the dream. “I don’t have this. I don’t have this,” I whisper over and over like a mantra. In the background, I hear papers shuffle. Somebody coughs.

“They just sent over the results,” the nurse finally says. The receiver trembles in my hand, knocking against my cheek. Her voice breaking, she says, “You don’t have this. You’re negative for the Huntington’s gene test.”

We both weep.

Fear controls my life – until then. Getting tested is the bravest thing I’ve ever done. I’m so ecstatic about winning the genetic coin toss that I don’t see the guilt heading right at me, guilt for not having the deadly gene when my father does. He discovers he inherited it from his estranged mother.

Now, I have to watch my father suffer through the end stages of this cruel, alienating, and unforgiving disease. I watch him suffer the indignity of losing control of his bowels and endure hallucinations. I see people who have known him all his life shun him like he’s contagious. I have to watch his stick-thin arms and legs writhe so uncontrollably that it catapults him into another seizure. I watch him drool, dribble, fall, and mumble words I pretend to understand.

Only a Higher Power knows why Huntington’s Disease became my father’s destiny and not mine. Instead I receive the gift of watching a man walk bravely, knowingly, into a future no human being deserves to suffer. I receive the gift of understanding those years of torture I endured at his hands, an understanding that replaces self-destruction and bitterness with forgiveness for my father and myself. Now I know I didn’t cause the abuse. The reason he didn’t “stop it” was because he couldn’t.

Although it didn’t happen the way I expected, I make peace with my past.