- Second in a three-part series.
Andrews – I picked up the receiver. “Sarah,” the voice said, “I’m afraid that the results weren’t what we had hoped.”
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The call was a follow up to a series of conversations I’d had a few weeks before at the University of North Carolina genetic testing center’s Chapel Hill office.
The first with a social worker, where – in a sterile, blank but unforgettable room – she read my life to me from a new, thin file.
“You went to UNC, and you have worked as a freelance editor, veterinarian technician and mother. Now you are a special education teacher,” she said.
“Yeah, but I am having problems with that,” I said in understatement.
“You left this one blank. What do you enjoy doing in your free time?”
“I do nothing anymore. I can’t get started,” I said.
No more running, yoga, painting, or anything. Instead, I rushed from the car to my bed, pulling the covers up around me. Hiding from the world.
But that was too many words to say, so when she asked why, I said, “Everything seems so hard. So confusing.”
So terrifying and broken. I had no idea how to begin to fix anything.
“What about at home? Your housework?”
“Randy does everything,” I said. “He works a full day, then he comes home and does everything that I was supposed to have done around the house, and he makes dinner and manages the kids.”
Randy and I are an early success story from match.com, the online dating site. Our first date, at a Starbucks inside a Barnes & Noble, is on my life’s greatest hits list of memories. I can replay it flawlessly in color, along with so much of the love story that unfolded. But there would never be enough space or enough words to do it justice.
That’s when tears came
“How is your marriage?” Reality chimed in.
“I love him more with every year. He is the most honest person in the world,” I said.
I marveled, like I have and do, about this person, my person, whose love and loyalty feel limitless. The next question ripped my focus back to why I was there.
“Who in your family has had Huntington’s disease?”
That’s when the tears came.
“My maternal grandmother and great aunt, and now my mother’s brother.”
My mute grandmother spent her days stiff with dystonia. My great aunt’s chorea was so bad that she wrapped her legs around each other to keep them still.
“What about your mother?” she asked. Sobs began.
Here’s why: If my mom doesn’t have the mutant gene, it is gone from our line of the family forever. I would be free, and my descendants would be free.
One “tell” for Huntington’s disease is abnormal agitation, a symptom mom personified. Nonetheless, I convinced myself that HD had spared her, with illogical suppositions like that she could not become agitated because she already was.
My mom was my “get out of jail free” card. I was invested in her not having HD, and seeing the truth would have destroyed layers of protective delusion. And we were getting close to the truth. I let out another loud wail, which startled even me.
‘I can’t wait’
It was an ill-timed outburst, because the next person to come in was the psychiatrist.
“My job is to determine whether you are mentally stable enough to handle a bad answer from this test,” he said.
“I’ve gotta have it!” I said. The overhead light was suddenly so bright that it hurt, so I squished my eyes shut.
“Maybe you might want to delay this test and process things a little more. There’s no reason you have to take it right now,” he said. But I couldn’t go through this again later.
“I can’t wait,” I said, standing up from the chair so quickly that it slammed against the wall. I sensed I was close to being rejected or committed.
“Look,” he said. “I can’t sign off on you getting this test today if I think your life will be endangered.”
I forced myself to raise my head and look him in the eye. “The only way it would be endangered is if I continue not knowing.”
I sat back down and buried my face in my hands, while he left me alone in the room for an uncomfortably long time. A phlebotomist came in to draw my blood.
Not too long ago
As newlyweds, Randy and I walked, hiked enjoyed the beach, went scuba diving and visited friends and relatives.
When life became more challenging, we postponed trips and dates until our years were a little more golden. After all, the greatest appeal of any activity was spending time together.
When we moved to New Bern, he worked at the newspaper and I worked at an elementary school. Life was good. Until it wasn’t.
The apathy and depression started at home. My short-term memory dwindled, and I could neither organize lessons nor teach them.
A panic attack when driving over the Neuse River bridge, removed any doubt that it was time for medical intervention.
I wanted to rule out the worst first, so I decided to get tested for Huntington’s disease.
The results came back on Christmas Eve. We received the result at the office of our family doctor, Dr. Derr.
When the phone call came, Dr. Derr left the room, learned the results and re-entered, expressionless.
Just before I picked up the phone, gratitude washed over me. I was simply having a nervous breakdown. A brief psychotic episode. A hypochondriac field day. All reversible conditions.
It was in anticipation of this great weight of relief, that I answered that Christmas Eve phone call from Chapel Hill.
You know what they said
The bottom fell out of my world, and I collapsed. My eyes were open, but I was checked out. Blurry details followed.
For days, I cried. Crying I had never experienced before, but have so many times since. Trying to cry myself away from something that shouldn’t be there. Grieve down to the bottom of it.
But the facts couldn’t be changed. I had been born a mutant. And I was trapped to live with that knowledge.
Randy, who had been caring for me throughout all of this, tried several ways to get through to me. A DVD we didn’t remember ordering arrived from Netflix. Avatar. Randy played it. The colors, sounds, and story swept away despair for a flicker of a moment.
“Play Avatar,” I said
whenever it ended. For days I watched it, rapt. He ordered a copy, which we still have.
“Are the blue colors soothing?” asked Randy, trying to understand why this movie was the one thing that could get through to me.
“I identify with the guy who didn’t have the use of his legs but could run free as an avatar.”
I wished I had an avatar. A sheath or a cloak or a skin I could put on, inside of which there would be no Huntington’s disease.
I’ve spent my whole life since then trying to fashion one.
Next week: Learn about how we try to live our best lives.