Two days after I moved into my freshman dorm, my grandfather was taken off of the ventilator that was keeping him alive. Twelve weeks prior, he had attended my high school graduation. Four weeks after he sat on those crowded bleachers waiting for my name to be called, he started feeling confused. Once he could no longer remember how to operate his iPhone, my grandmother, his wife of 41 years, finally convinced him to get checked out.
I spent the summer before my freshman year of college aching for what came next. I was working part-time as a barista, spending my nights in the dusty apartments of coworkers much older than me. People I barely knew taught me how to smoke weed and how much Adderall to take after a night of partying. I felt like I was almost there, like my life was just within reach.
My mom was the one to tell me that my grandfather had suffered a small stroke. Although he could only speak one or two words at a time, I was told the possibility of recovery was high. He had somehow convinced his doctors to let him rehab in the home he had spent four decades raising five children, four stepchildren in. The place that still felt familiar and safe, even when its walls became unrecognizable to him.
As my grandmother scheduled countless physical and speech therapy appointments, I was emailing the stranger I would be living with for the next year. Our most thoughtful discussion before moving in was about the color scheme we wanted for our shared space. We went with grey and teal because they seemed grown up.
I was so excited to decorate my dorm. I spent hours scouring the internet for posters that I envisioned lining the concrete walls of my new home. I settled on buying two, maybe three. One of them, a classic “I WANT TO BELIEVE” poster. I had discovered The X-Files the year before and was all-in. I fantasized about someone passing by my room and catching it out of the corner of their eye. They’d stop in the doorway to say they knew the show too. We’d talk about it and become friends for life—wasn’t that what happened when you went to college?
As move-in day grew closer, my grandfather’s prognosis got worse. His therapists struggled to find treatments that worked for him. He seemed to be growing more frustrated and more confused by the day. My dad returned from visiting him one afternoon and informed me that he had had, “an episode.”
He was sitting with my dad when he suddenly ran onto the back deck, yelling for someone to “get [him] out of here!” He then ran into the garden bed in the front yard and laid down, refusing to get up until police and paramedics arrived. I went to bed that night and had a nightmare that he broke into our home. Confused and angry, my sweet grandpa screamed at me. I couldn’t figure out how to help him get out, no one could.
During that scary and uncertain period, my grandmother kept family members updated via status posts on Facebook. Acting as a sort of mass communication tool at the time but when looked back on now, the posts read like love letters to a rapidly deteriorating life. In one update, after a particularly difficult day she wrote, “At one point, his eyes filled with tears for the first time since this nightmare began. The next time he hugged me (never been hugged so often in my life), he quietly but clearly said, “I didn’t want to end this way.”
One week before I left for college, my grandfather was admitted to the hospital for the final time. His behavior had become too erratic and his moments of confusion were too much for my grandma to handle on her own. How scary it must have been, to look into the eyes that had accompanied you through half of your life and realize you were standing alone.
My parents and I packed up the family van the night before move-in day and tackled the 3-hour drive to the campus by mid-afternoon. I wasn’t sure what my roommate would want so, I hung my posters in the (maybe) four-foot space between the top of my bunk and the ceiling. My mom took a photo of me in front of them before they left. I remember being surprised at how uneventful it all felt.
A few days after my grandpa was admitted to the hospital, the doctors informed my family that he did not have a stroke. Instead, they told them he was suffering from a rare degenerative disorder called Creutzfeldt-Jakob’s disease. The disease, in his case, was spontaneous and the odds were one in a million. I explain it best as it was told to me, his brain was erasing. It wasn’t dementia, it wasn’t a stroke. His brain cells were simply disappearing.
The doctors informed my grandmother that it was now just a matter of time. No treatment could reverse this course, all she could do was decide when and how he’d begin the end-of-care process. Of this decision, my grandma wrote, “It amazes me that my heart can ache SO much, and yet my body keeps on walking, talking, driving, and going through the motions. It will even get me out to my kitchen and to breakfast. It is telling me that I will get through this; that all of us who love him will get through this. But, I can’t help but wonder about that now and then.”
With this knowledge, I tried to focus on familiarizing myself with my new surroundings. I went to orientation meetings and on-campus events designed for freshmen to get to know one another. I went to my first frat party. I let boys touch me despite being fully aware that I was not straight. No one stopped by my room and struck up a conversation like I had imagined. I tried my best to explain to my new friends the reason for the frequent and hushed phone calls with my mother but, found out rather quickly the answers I gave did more harm than good.
I found out that he had died on Facebook. A family member writing a tribute post before I could get the call. I was sitting in the cafeteria hall alone, surrounded by hundreds of my fellow students. I informed the girls in my hall and the roommate I had known for just shy of ten days, they didn’t know what to say.
My dad picked me up and brought me home for the funeral. During our drive, he explained that watching his father die made it clear to him that we are not just “one thing.” He informed me that he knows we have a soul and that it leaves slowly; not all at once. Because even with half of his brain erased—my grandfather refused to eat the skin on a potato he was being fed. “He’s hated the skin on potatoes his whole life!” He told me, “It was like he was gone but that piece of him was somehow still there.”
After the funeral, I would return to my tiny college dorm and the strangers that came along with it in time for class on Monday. I would spend the next ten weeks there deciding that I hated it and the two weeks after that working up the courage to tell my parents. I often recount this period as the worst time in my life, for many reasons. I was very lonely and very closeted. I felt isolated in this conservative town with no car and no job. And also, I had just found out that your brain could erase without reason. There was no diet, no amount of exercise, or goodwill that could prevent this from happening to you. It became entirely possible to me that I could wake up one day, unable to find my way out.
I stayed in a lot. I didn’t know how to make friends outside of the girls in my hall and I got tired of listening to them talk about boys and puking on our walks home from the frats. On this particular night, I had put on The X-Files as background noise. With nothing else to do, I spent a lot of time on my schoolwork. I was typing some paper when I heard a certain redheaded-skeptic say the words, “Creutzfeldt-Jakob’s disease.” The episode I had seen at least five times before, took on new meaning in this funhouse version of my life. I closed my laptop and restarted the episode from the beginning. It’s season two, “Our Town.” You may know it as the one where Scully almost gets cannibalized.
In the episode, Mulder and Scully are sent to Arkansas after a federal poultry inspector goes missing. The members of the town, including the missing chicken-cop’s wife seemingly do not care about his disappearance. His wife calls him a cheater, telling the detectives, “He left me a long time ago, leaving town is just a formality.”
It isn’t until a young woman working at the town’s chicken factory holds a knife to her boss’ throat mid-shift that Scully and Mulder decide they’re interested. The woman, Paula Gray, is shot and killed in the standoff before our feds can talk her down. After performing Paula’s autopsy, Scully informs her partner that the girl was suffering from Creutzfeldt-Jakob’s disease. A condition so rare that she had only seen it in textbooks.
As the episode unfolds, more people in this town begin acting homicidal. After a truck driver almost crashes into Mulder and Scully's car head-on, she drops the infamous line: “I just came up with a sick theory, Mulder.” And that she did. She figures out that the town weirdos are eating each other and feeding the uneaten remains to the chickens. It just so happened that our poultry inspector did not run off to start a new life rather, he was eaten by several cannibals, Paula Gray included.
Somehow, they figure out that the inspector had Creutzfeldt-Jakob’s disease which, in turn, infected both the people and the chickens that ate him. The cannibals did not want this information leaked therefore they kidnap Scully and almost eat her too but, Mulder saves her in the nick of time. (Inventors of romance, by the way).
It is a crazy episode of television. It made me feel zero percent better about this real disease that really happened to someone I loved. It didn’t make the injustice of it any easier to deal with. It didn’t qualm any fears I had about it happening to me. It did make me laugh, some. And it did give me a frame of reference I could use going forward. “Oh, what happened to him? Well, have you ever seen that one episode of The X-Files where…”
I looked up at the walls of that cinder-block room, the posters and prints I had so meticulously planned out. I took note of our shades of grey and teal accents. I thought of my grandfather and his pleas to be let out. The walls that surrounded my life had disappeared before my eyes. I couldn’t recognize any of it. I couldn’t recognize me.
When we first meet him, the leader of the cannibals tells Mulder and Scully that chickens are, “perfect creatures.” Meaning that we humans can use up almost every part of their body for our own gain. Erasing each piece of their existence little by little.
I thought of the parts that make us perfect. The idiosyncrasies we’re born with, the ones we’d rather die with than change. I thought about my grandfather’s acute awareness of his situation and the ways he tried to tell us our efforts to keep him here would not work.
I thought of the pieces of him that told me jokes he thought up all on his own. The pieces that knew how to make me “Mickey Mouse” pancakes for every breakfast that I spent with him. The pieces that raised his kids and loved his wife. The pieces of him that he wanted to instill in his grandchildren. The pieces of him that were alive in me.
My dad spoke at his funeral. He said that when he was a kid he didn’t have Google, he had his dad. The type of guy that had an answer to every question. The pieces left of his brain now sit in some university. The disease that eroded it is so rare that it still needs to be studied. I want to believe that in death, his answers live on—and the pieces that make us perfect, are never really gone.
Note: This month marks ten years since the events of this essay—all of which feel like they simultaneously happened yesterday and an entire lifetime ago. I wrote this piece nearly two years ago and have been staring at it in my drafts until I got the courage to hit post. Since writing this, my grandmother has also passed away. About a month later, I went to their house for the last time and found this note pinned in her kitchen. The date on the side says she found it about three weeks after my grandfather passed away.
This is absolutely amazing!!! I’m so proud of you. I cried the whole way through reading this.