Tangles

In the 1980s, I kept a blank cassette inside the tape deck of my radio, so if a song I loved came on, I could run over and simultaneously hit the “record” and “play” buttons, and add that song to the mix tape developing in its boom-box womb. The beginnings of the songs are cut off, and the DJ often started speaking before the fade-out was complete. But my collection of homemade tapes was priceless to me. And I thought I would be able to listen to them forever.

***

My uncle was twenty years older than me, my mother’s younger brother. He was 100% Italian, the child of immigrants, but he was decidedly “American”—Chevy pick-up trucks and Miller beer, fishing or hunting on the weekends. He worked in a small factory behind our ACME, forming molten metal into machine parts.

He lived with my grandparents in the same South Jersey town as me, just across the Betsy Ross Bridge from Philadelphia. Every Sunday, my family went over to their house for meatballs and spaghetti—fat bucatini pasta with holes through the middle like straws. Sometimes there was braciole—thin slices of steak rolled up with garlic and parsley and tied with sewing thread. My grandmother was a seamstress, so there were plenty of thread colors to choose from.

My one-year-younger sister and I would draw pictures and wait patiently for my uncle to get home. He was an adult, but young at heart, and he focused more on the parts of being an adult that kids would enjoy. Not the boring parts like taxes and aches and pains that most other grown-ups seemed to drone on about. He built us swings in my grandparents’ yard. He taught us to play chess. He let us choose handles and try to talk to truckers on the CB radio in his truck. Even though he was an adult, we felt like he was one of us. 

Eventually he would walk through the door. If it was Sunday, he smelled like fish guts. If it was a weekday, he smelled like machine oil. His clothes had to be washed at the laundromat down the street—not with the rest of the family’s clothes. And so, after waiting and waiting for him to come home, we then had to wait even more for him to take a shower. Finally, he would join us in the living room, and we would play. We sat around a coffee table that he had made, his bottle of Old Grand-Dad and giant cans of pretzels and potato chips waiting underneath.

Sometimes while we waited for dinner, I got a thrill out of looking through my uncle’s small record collection, which was mostly 1970s’ classic rock. His Grand Funk Railroad stood right alongside my grandfather’s Mario Lanza albums. The pictures of the wild-looking, long-haired rockers on the album covers hinted at the scary but intriguing world that adults whispered about in our presence. I wondered if my uncle had any experience in that world. I wondered what my experience would someday be in that world. I borrowed some of his records and copied them onto blank cassettes. 

***

My uncle wanted to take me hunting, and I really wanted to go. But my mom forbade it, and in retrospect I am glad. As I got older and my world expanded, the differences between my uncle and myself grew. He would good-naturedly roll his eyes at my small foreign car and my concern for the environment.  

I think that my uncle was hoping that I would be like him, and to some degree I was and still am less bound to what, as an adult, I am “supposed” to do. But, ultimately, I followed a comparatively conventional path. “You’re getting too old,” he would grumble, and reach out to tousle my hair. A few times, when I was a teenager, his fingers got caught in my 1980s’ hairsprayed bangs, which made me feel like even more of a traitor.

***

Right around my uncle’s sixty-third birthday, in April 2013, he started to have trouble with his balance. We were celebrating his birthday at my parents’ house, and my mom noticed how he suddenly seemed to be walking “like an old man.” He began having difficulties at work and had a minor car accident. He went to several doctors and specialists and a rehabilitation facility, but no one knew what was going on.

He got rapidly worse over the next few weeks with abilities vanishing each day. One day he could speak, the next day no more. One day he could make eye contact, the next day that was gone, too. It was horrifying, but we held on to hope that a diagnosis would show how to help him get better and we would get him back. Maybe it had something to do with his metal exposure at work and chelation would help. Maybe it was a stroke and he could regain skills with therapy. 

By summer, he was unable to speak or eat. One hot afternoon, I was sitting beside his bed at Thomas Jefferson Hospital, sweating in the protective hospital gown and gloves I had to wear because he had acquired Clostridium difficile, a contagious bacterial infection that is notorious for overtaking the gastrointestinal tract of those who have been taking strong antibiotics, especially in a hospital setting.

The neurologist came into the room and asked me if I was my uncle’s next of kin. I told him that that would be my mother, who would be visiting later in the day. He had a diagnosis, but he couldn’t tell me; he had to tell my mother first. However, he smiled, patted my uncle’s arm, and assured me, “He’s not feeling any pain.” I think he meant to make me feel comforted, but his cheerful words were, in fact, a painful blow. I realized at that moment that there was no hope for a recovery, and my hopes were instantly yanked away. 

***

Later that day, the neurologist told my mom that it was an untreatable condition that was 100% fatal. It was Creutzfeldt-Jakob disease (CJD), in which malformed, infectious proteins called “prions” destroy the brain. In medical illustrations, the prions look like sections of stretchy, coiled telephone cords tangled together and connected by thinner sections of wire. 

It is a rare disease in humans, but it got a lot of attention in the mid-1990s with the outbreak, primarily in England, of bovine spongiform encephalopathy or “mad cow disease,” which is also caused by prions. When some people ate the meat from affected cows, they developed “variant” CJD. I knew more about prion disease than the average person because during this outbreak I was working as a writer and editor of an infectious disease publication, and prion disease was a hot topic at the conferences I covered.

Researchers believe that other forms of CJD can be caused by genetic inheritance; or acquired by exposure to contaminated transplant tissue, blood, or surgical instruments; or that it can be “sporadic,” which means that it just happened randomly. The doctor assumed that my uncle’s case was the sporadic form.

There was nothing anyone could do. My mom found him hospice care in a New Jersey hospital. He had the bed closest to the door, and a much older man had the bed by the window. It looked like an ordinary hospital room, although it was quieter, and the IVs and monitors were absent. 

I was disturbed that they weren’t giving him any fluid or nourishment. How can that be okay, I asked the nurse, and she said that when the organs are failing, the body can’t handle the fluid that would come in through an IV. That explanation did little to ease my distress.

***

I seethed at the way that people would stand next to my uncle’s bed and talk about him as if he wasn’t there. He was comatose, but I knew that if there was any chance he could hear, he would be furious. I needed to do something to show him that at least I knew he was still there. 

On one of my last visits, I brought a tape player and my cassette of Deep Purple’s Machine Head, which I had copied from his LP. 

I love Deep Purple—from their late-1960s’ song “Hush,” which came out during my uncle’s teenage years, to 1984’s Perfect Strangers album, which I considered “my” Deep Purple, as it came out when I was fourteen and madly in love with classic rock; I still love to listen to the bombastic title track. Machine Head, which came out in 1972, is Deep Purple’s most well-known album, containing “Smoke on the Water,” “Highway Star,” and “Space Truckin’.” 

Deep Purple is substantial; if you clench your teeth, you can feel the notes and chords from Jon Lord’s Hammond organ vibrating in your gums. It is not meant to be played softly. In the hospice room that day, I compromised with a volume that I thought would do the music justice, but not disturb the other patient in the room or get me kicked out of the hospital. I sat in the hard plastic chair beside the bed, with the tape player in my lap, and tried not to look at the brown fluid in the urinary catheter bag. I tried to think of uplifting things to say to my uncle, and tried to keep my voice steady, just in case he could hear. 

I forget which song it was—maybe “Never Before”—but an awful screeching started to come out of the tape player. It wasn’t the guitars or the vocals. It was the old, fragile magnetic tape twisting and tearing.

I ejected the cassette, and gently pulled out the shiny, brown tape, which was wrapped around the machinery. I looked at the tangle of tape dangling from the bottom of the cassette for a moment; it looked kind of like the prions that were ravaging my uncle’s brain. Then I dropped it, a little too loudly, into the non-biohazard trash can beside the bed.

***

Maybe my efforts just served to make me feel better—that I created one more memory with him in spite of a hopeless situation. That I tried to do something for him that no one else but me could ever think of doing. But I think that my uncle probably would have chuckled at the way it ended. I can imagine him appreciating my earnestness and reaching out to ruffle my long, curly hair, one last time. This time his fingers would not have become ensnared; I had long since ditched the hairspray. 

-Michelle Quirk

Michelle Anthony Quirk is a freelance editor and writer. She grew up in New Jersey, and has lived in Philadelphia, PA, with her husband and daughter, since 2006. In addition to creative writing, she loves to play piano, guitar, and mandolin.