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DEADLY GENES - A DAUGHTER'S STORY - FACING 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 Beatle 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 what 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 weeping 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 drove home a truth I’d known but had been too helpless and young to act upon or admit until now: I was no longer safe in my father’s house.

While my high-school classmates planned for college, I began mapping my future that summer night. In three months, I’d be eighteen. I could legally run wherever whimsy and fate led me -- away from him. No college for me. No career path. No security. I had something better – the sweet freedom of escape.

For the next twenty years, I hop scotched to Dublin, London, New York, San Francisco. Those were hard years, years of minimum wage paychecks. Years of weeping into my whiskey sours whenever I called and my father hung up the instant he recognized my voice. “Hi Dad, it’s ….” Click.  Two decades of falling off barstools as I sought redemption in dark, addictive places and in faces eerily familiar to the one who haunted my dreams.

Like a moth to a porch light, I became drawn to those faces -- men who were ghosts of my father. I was drawn to the humiliation of their physical abuse, the verbal cruelty, and their foot-stomping demands that I grovel to prove myself worthy of their sadistic, erratic affections that I mistook for love.

The prodigal daughter returned home at age 38 needing to make peace with my haunted past. Not in my most vile nightmare could I have envisioned the sucker punch that would knock me off my already precarious balance and ultimately help me make that peace.
 
“I’m dying,” my father said on a morning in March of 2004.

I’d 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 bedsit in Dublin. Time and again, curled up fetal on secondhand mattresses, I’d lull myself to sleep by imagining the terrain of a terminal illness -- his. The death at the end of that illness brought closure.  I conjured up scenarios of pale, hairy hands fumbling for mine between the side rails of a hospital bed. My abuser uttered words of remorse just before flat-lining, finally setting me free.
 
Now in the glow of the lamplight, these same hairy hands fumbled for mine. I heard the words of remorse but they didn’t set me free.
 
“Huntington’s Disease,” he said. My scream sent my two cats streaking down my hallway.I knew immediately what Huntington’s disease meant.

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

Thousands of exhaustive internet searches later, I learned that the earliest symptoms of the disease are psychiatric -- violence, aggression, scape-goating, 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 gave me shelter from the storm temporarily.

Then I learned that my chance of inheriting this time bomb gene whose symptoms typically manifested in mid-life was fifty-fifty.

One hell of a coin toss.

“Need to get yourself a DNA test,” my father said after breaking the news. “Make sure you’re clean before I make out my will.”

His words made me feel dirtier and more panicked than I’d ever felt before. I didn’t want to toss a coin on my genetic fate. These weren’t good odds. And the only thing worse than having the disease would be knowing I had it. If you have the gene, you develop the disease.  If you develop the disease, it runs a brutal course. There were no more tosses of the coin, no more chances.

But after weeks of gut-wrenching sobbing and nightmares that left me drenched in sweat, I could no longer live without knowing if this gene was in my body. The time had come to give up my blood.
 
I called the doctor’s office an hour after having the test to beg him to throw out the vial and cancel the test. “I don’t think you have this,” my doctor said, trying to calm me. “I think you’re going to come back clear.”My disbelief turned into trusting the doctor’s intuition. I let myself freefall into whatever destiny had in store.

The two weeks of waiting for my test results were excruciating. Dread filled my days and nights. I rode a rollercoaster of emotions, mourning my up-in-the-air fate and the fate of my father, who had unintentionally mapped out my life for such misery. I longed for the chaos of the past instead of this new chaos. I’d gladly trade hating myself and him for knowing he had Huntington’s and I might too.

And I drove myself insane symptom-hunting.

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

As reckoning day drew near, I no longer needed the diagnosis of HD to be institutionalized. I was ready to be committed to a sanitarium from the stress of waiting. I prayed fervently to my Higher Power for a sign that would prepare me. “Just let me know, God,” I begged one night before falling asleep. “Let me know if I was born with this gene, and -if this disease is going to destroy my brain and body.”

That night in my dream, I stand in an airport terminal staring out the window watching 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 heading towards his death on that plane. Never have I felt so helpless, so horrified. I press my fingers against the glass, bow my head, and cry.

When I awoke before witnessing the mangled aftermath of the crash, I knew my Higher Power had answered my prayer. I wasn’t on this doomed aircraft. I didn’t have this gene. But I would be forced to watch my father – who did have the gene– crash land.
 
Knowing I could trust my vision, I rang my mother. With tears of hysterical gratitude, I told her I was negative.

“Just calling to see if my test reports came in,” I said, calmly ringing my doctor’s office days before the results were due. Somehow, I knew they’d be there.

“Please hold,” the nurse said. The next five minutes felt like an eternity. It was too much time. I started thinking. I stopped trusting the dream. “I don’t have this. I don’t have this,” I whispered over and over to myself like a mantra. In the background, I heard papers shuffled. Someone coughed.

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

Both of us wept.
 
For someone whose life had been controlled by fear, getting tested was the bravest thing I’ve ever done. I was so ecstatic about winning the genetic coin toss that I didn’t see the guilt headed right at me, guilt for not having the deadly gene in my body when my father did. He discovered he had inherited it from his estranged mother.

Now, I have to watch my father suffer through the final stages of this cruel, alienating, unforgiving disease. I watch him suffer the indignity of losing control of his bowels, hallucinate. I see people who have known him all his life shun him. I have to watch his stick-thin arms and legs writhe so uncontrollably that it catapults him into another seizure. I watch him 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 received the gift of watching a man walk bravely, knowingly, into a future no human being deserves to suffer. I received the gift of understanding those years of torture I endured at his hands, an understanding that replaced self-destruction and bitterness with forgiveness for my father and knowing I hadn't caused the abuse. The reason he didn’t “stop it” was because he couldn’t.

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