Losing Pieces of Myself

I haven’t slept in twenty-three days. I know exactly what I want to say, but I can’t say it. Thank you, my love, I can do that, I think. My jaw just rattles up and down like a nutcracker. There are noises, but not the ones I intend. I can’t sleep, my love, I wanted to say, What I wouldn’t give for some sleep.

Laurel takes a wet rag and dampens my burning forehead, giving me a healthy sip of ice-cold iced tea, which I try to lift on my own with my shaky left hand, only to send splashes of reddish-orange liquid over the sheets of the bed. At sixty-six years old, I am too young to be wasting away, but yet, almost twenty years older now than our oldest, Grace, was when we buried her.

I look over at the nightstand and see the red and black origami ladybug looking over at me, sad and mournful. Laurel, hand it over here, I think, I want to finish it so it can keep you company. But she can’t understand me.

Sometime in the last two months, on a day I couldn’t quite put my finger on, my home stopped being home and became my prison. Sometimes, like now, I try to speak, but can’t—trapped inside myself. Sometimes I am myself again—but trapped in these four walls. For weeks, I’ve been losing little pieces of myself. But this is a big one.

As a school bus driver and former accountant, I am accustomed to self-reliance. Punctual. Prepared. To a fault. The dependable one everyone looks up to and counts on to get from Point A to Point B, to know the answers—it’s a refund—take the depreciation—register a home office. Even when our little girl, Grace, had first fallen ill in her early forties, I had been the one who everyone looked to for answers. But now, there were no more answers left, only questions.

It had started on the first day of school. A September day just like any other year's first day. My fifth graders were rowdy loading and unloading—coming aboard one at a time, then rushing off to school all at once—and the reverse on the way back—just like it is with life. The sweet sound of their laughter and boisterous chatter heralded in the promise of a new school year—everything that was beginning again. The familiar cycle of the end of summer and the beginning of fall. My big yellow bus jiggled and jolted as it accelerated from one stop to the next, the accordion door greeting children with a protective red stop sign and a warm and inviting smile full of stairs instead of teeth. All was normal. All was as it should be. We were off on our route back to Lake County Intermediate School, a seemingly mythical place, at 10,152 feet above sea level, high enough to blow kisses to the clouds. The pyramiding peaks of Mount Elbert and Mount Massive loomed like sentries standing watch over man’s affairs.

As I had picked Cathy Coughlin up, down by Turquoise Lake, I had made a seemingly unconscious turn. Cathy with her pigtails and her chiclet teeth with braces had stood up and grabbed the green seat back in front of her in exasperation and asked, “Kevin, why are you turning the wrong way?” I had just turned and said, “Taking a slight detour.” But that was a lie. The problem was I forgot where I had just been and where I was going. It was just a momentary lapse. But it had never happened before that day. Eventually, I landed the bus back to the front entrance of the school, at the end of 6th Street, looking out over the Rocky Mountains. Part of me was there looking out too, breathing in the fresh mountain air, but part of me was missing. And I didn’t know why.

Just like I always did on the first day or on holidays, and especially at the end of the term, I had a basket of origami figures for each kid, which I handed out as they offloaded from the bus. Fortune tellers, lotus flowers, jumping frogs, swans, hats, turkeys, hearts, Christmas trees, pointy-eared cats, bats, mice, boats, flowers, and goldfish.

Later that afternoon, after dropping off the last of the kids, and the last of my origami figures, parking the bus in the lot, and taking my green Honda Civic back home, I walked in the front door. I said, “Hey Laurel, I think I’m getting doty in my old age.” Laurel had laughed and brought me an iced tea. “You she said? My big strong guy? Not a chance in a million.”

But that was exactly what it was, a one-in-a-million shot. We had both laughed it off and had gone out on the deck. We had looked out at the clouds passing over the Rockies. A one-in-a-million view on a one-in-a-million night. The math was actually much more severe than that. I did it in my head: 100 years * 12 months * 30 days in an average month = 36,000 nights. So, the night was even rarer than I thought, thirty times as rare.

But what I didn’t know, and rarer still, was how few of those nights remained. The clear ones. The active ones. The ones where there were enough pieces of myself left, that if I gathered them together, they still amounted to me—to Kevin Brady. Laurel had kissed me while my mind raced, and she had said, “Oh Sweetness, can you believe we moved out West? Two old codgers like us on a great adventure. Out here in God’s Country. If Grace could only see us now, in this place.”

I had put my arm around her and thought how wonderful it was in the magic hour, in our twilight years, out on our porch, in a place like this. And that was the night I got out the red and black tant paper and made Laurel a ladybug, with big black dots like tears on its rounded red wings. I made its body. The wings. The black spots. All of it, out there on the porch, watching the sun turn orange and recede behind the mountain range, turning the clouded sky deep purples and magentas as it went down. She smiled at me and kissed my cheek. "Little red bug, oh so cute, Here's a black spot for your suit. You’re made of magic." And then she said, “It means good luck and new beginnings.” We lit a fire in the fire pit, sat on our lawn chairs with the armrests up, and held each other for a long time, falling asleep out there under the stars. And didn’t wake up until morning. When I awoke the next morning, Laurel had got a Granny Square Crochet Blanket she had made for Grace when she was sick and laid it over us. And that was the last time I slept.

I got weak after that. Ataxia. Unsteady gate. Myoclonus. Sudden jerking. And the inability to sleep, even for a few minutes, the constant, persistent, dimming train of relentless consciousness. Just a few weeks later, we had gone to get all the tests and went to see the neurologist for answers. Dr. Goldman, who had become something of a friend of the family, was keen to test the cerebrospinal fluid, looking for spongiform changes. Doctor Jill Goldman had discouraged me from doing the genetic testing. She had said that if you get the wrong answer, “You can’t put Pandora back in the box—you can’t unknow your fate—sometimes knowing can be a curse, and not knowing is a kindness.” But I had to know. The test would check the PRNP gene, the same one Grace had trouble with.

Dr. Goldman took her stethoscope out and checked my vitals, a small light for my eyes. Then she said, “Lift your arms out to the sides, bring your index fingers in, and touch your nose with both fingers, making two wings.” I did as she said. And there it was. Wing beating tremor. When I put my fingers to my nose, which was bandaged from my recent fall, and flared my elbows out, they flapped like a chicken. Especially my left arm. If I raise it to my nose, it starts flapping until it finds its way down to my side. I remember when they did this test on Grace. Laurel insisted I come in when I fell in the bathroom and broke my nose. “I know where this is going doc, MRI Report. Lumbar puncture. The need for a cane to walk. Sudden, inappropriate laughter. Always hungry but losing weight. Just tell me what I’ve got to do, I need to be tiptop in no time at all for my best gal.”

And I smiled at Laurel. But I knew of a few symptoms I hadn’t come clean about. Hallucinations. Grace coming to me by my bedside, saying, “Don’t worry Dad, it’ll be time to fly away soon.” You see a thing like that, you know you are not long for this world.

It was a death sentence if it was CJD. A glitch on chromosome 20p12-pter. Proteins at the molecular level misfold and make fatal origami, that spaghettifies your neurons, shutting down the whole machine from the CPU. There is no treatment. No cure. One in a million. Of all the lotteries to win, I had to win this one. Death proceeds quickly within a year of diagnosis. Sometimes within weeks.

We wait what seems like a million years for Dr. Jill to come back in. I can smell the pungent odor of cigarette smoke in the air—sulfur, tar, and wood—the heaviness of a forest fire—the smell of anxiety. She puts her hand on her forehead. She says, “I don’t know how to tell you this. First Grace. Now this.” She hands me the test results. Her hands shaking as much as mine.

Laurel looks at me, her eyes wide and full of those two big pupils like the biggest ladybug spots you’ve ever seen. She clasps her hands together like in a prayer, her brow crumpling, and she puts her forehead against her clasped hands, unable to face what this means for us. I see tears running down the sides of her wrinkled hands and hear her grasping madly for air.

I will just tell people I have Mad Cow’s Disease. Technically, it is called Creutzfeldt-Jakob (pronounced “croy-tz-felt ya-cob”) disease. I watched my little girl slip away from it. I’d hang by my toenails for a decade if there was any escaping it. But I know better. I just don’t know if I can ever say goodbye to Laurel. I don’t know if I can leave her alone.

A few minutes after that, Dr. Goldman steps out again, and a ladybug flies in from the open window and lands on Laurel’s hand. I find my voice. “You know my love, if a ladybug crawls across a young woman’s hand, she will be married within a year.” A small tear drops onto her cheek. “Promise me, my love, wait two years, will you?” She laughs. And she says, “I will wait a million.” And the ladybug crawls clear across her hand and takes flight, leaping out of the window into the cool November air.

It will be Christmas break before you know it. Davey, the substitute bus driver will have to take the kids home after their last exams. I have to remember to make a box full of origami for him, complete with notes written on the interior of the folds. And I really should say goodbye to Cathy Coughlin and her folks too. There is a lot to do, but so little time left.

I stare out the window at Mt. Elbert and Mount Massive and I see Grace waiting for me just beyond the range, floating back and away from the Continental Divide. And when I gather myself again, I am home and Laurel has a rag on my head, and I haven’t made my box of origami for the children yet. Why are the days rushing away from me? I have so few days left. I want to remember them! I want to finish things right. But who was I talking to? I look out again at the mountains. At the ladybug on the dresser. Where did Laurel go? I close my eyes and hope I’ll sleep, but my brain no longer possesses the machinery for sleep—at least not on this side of eternity—but it doesn't stop time from leaping from one moment to the next.

A woman stares at me from beside my bed. Who is she? I cannot place her. I feel so cold. My hands are folded across my chest. I cannot move them, try as I might to get up and close the window. I see a small ladybug on the windowsill. I look at the woman again. Who are you? It is just beyond my grasp. So cold. The ladybug flutters its wings. Then I begin to get warm, but I can’t lift my arms to take off my sweatshirt. A drowsiness. A new feeling. And visions of another woman at the edge of my bedside. Where am I? I have the feeling that the pieces are all scattered, like pieces of origami paper before they are hobbled together into shapes and geometries and folded to create something real and tangible.

I smile and the woman bends over and kisses me on my lips. I feel a tear on my cheek. Opening one eye just a crack, I see the ladybug lifting off toward those regal mountains, toward the vision of a spirit just over their golden peaks. And my eyes close. I let go of my consciousness. And just as I lose the last piece, I find myself completely whole.