It’s the one year anniversary of my dad’s death this week. I hope my mom reads this because she’s been trying to talk me into seeing a grief counselor for the past year and I want her to know that I’m doing absolutely amazing without therapy! In fact, I’ve actually been trying to figure out the best way to commemorate someone’s death. Should I go out to dinner? Is this an excuse for me to eat cake?
See, Mom? I’m doing great.
When I was 17 years old my dad suffered from a series of strokes that ultimately led to the diagnosis of an incredibly rare brain disease. While the condition affected his entire body, it primarily revealed itself through strokes, memory loss, and an overwhelming Diet Coke addiction. The chances of being diagnosed with this particular case of Central Nervous System Vasculitis (CNSV) sit at one in a million, so if anyone ever tells me to stop bitching about my bad luck let this serve as a reminder that it literally runs in my genes.
Because my dad’s disease was like a Picasso of brain trauma, it took doctors almost a year to verify that they had reached the accurate diagnosis. As a result, my family had to watch his mental and physical health deteriorate in complete confusion, which isn’t the most reassuring way to navigate the US healthcare system. All of us, especially dad, were forced into the reality that we would have to navigate our lives differently until we knew what was wrong—if we left him at home alone we’d write our phone numbers on a whiteboard, accompanied by notes about where we were and when we’d return, and the glaring reminder “DO NOT TOUCH THE OVEN!” Seemingly overnight he became the 10 year old who was walking a fine line between staying home alone and needing a babysitter.
On a summer afternoon while chauffeuring him to a doctor’s appointment with my mom, my dad mentioned taking a trip to visit my grandparents in Memphis; unfamiliar with the tendencies of his mystery illness, I reminded him that we had buried his parents 10 years prior. Sitting next to me in the passenger seat of the Scion TC he’d helped me buy, suffering from short and long term memory loss, he re-grieved the death of his parents for the entire 30 minute car ride. Once I dropped him off, I watched him through the rear view mirror as I drove away; he stood a foot taller than my mom, yet he collapsed his ghastly underweight body over her shoulders and sobbed hysterically— devastated at the loss of his parents, and terrified at what was happening to him.
I have carried that singular moment with me for the past 8 years; it plays on replay in my mind like a PTSD highlight reel. After a couple stints in rehab facilities, he moved into a 24 hour care home—whiteboards and sticky notes strategically placed around the house weren’t going to cut it anymore, he needed to be somewhere with closets dedicated to storing his medicine and a nurse who could walk him to and from the refrigerator. During my last year of high school we spent afternoons sitting side by side in matching recliners, watching Ellen and Days of Our Lives while bonding over my upcoming move to Chicago. He moved to LA from Memphis at 20 years old and took pride in being able to offer me advice where he could. Once I started school, our time together was limited to summers and Christmases; we’d talk on the phone in 5 minute increments throughout the week and from 2,119 miles away I grappled with the fact that his condition was progressing far beyond anyone’s control. His memory ebbed and flowed throughout the years— one day he’d remember that I was in my twenties and living the midwestern dream, the next he would ask me when I was going to get my drivers license. The undeniable silver lining here being that he completely forgot the horror that was teaching me how to drive.
Regardless, every day for 6 years he’d find a reason to call. In the middle of a trek to work in a blizzard, he’d call to warn that there was snow in the forecast. Keen on convincing me to move home, he’d regularly call me and explain that he’d spent the afternoon navigating the NBC Studios operator line, attempting to speak with his old coworkers so that I’d have a job in LA if I wanted it. I don’t know how many times he spoke with the operator, but I know it was enough times to become friends. If he thought that I was still living at home, he’d call to request that I drive him over a donut—and when I’d remind him that I was no longer a short drive away, he’d hang up immediately and call my sister. One evening in October 2017, I checked the mail to find a letter from his care home addressed to me. Inside was an LA Times clipping titled “Retirement Savings: Don’t Delay.” With it, a scribbled note on monogrammed NBC notepaper read, “Sarah, I thought of you. Love, Dad” I literally think he relearned how to write those 7 words just to let me know that no matter what, he’d never forget my spending problem.
I finally moved back to LA in May 2018. I was grateful that I would spend the last years of his life finally getting to know the man that his CNSV shaped him into—nearly everything about him had changed, except his sharp sense of humor which held strong and had manifested itself unabashedly. 5 days after I moved, and immediately following a phone call planning our first visit, he died. Barely a week into my new life in LA, I sat on the floor of my dead father’s bedroom and had to clean out years worth of memories. Tasked with emptying his night stand, I found a handful of crumpled up pieces of notepad paper shoved in the back of a drawer—all were the failed attempts at writing the 7 word note he had mailed me just 8 months before.
My dad was sick for 8 grueling years. He was in pain, he wasn’t himself, and he endured more than any human being should for an illness that would ultimately take his life. Over the course of these years I slowly grieved the loss of him— I had convinced myself that I was prepared for his unavoidable death because I had already mourned the loss of who he was as a father. Admittedly, at times I felt like I was just waiting for him (and us) to be put out of misery. I felt so emotionally removed from what CNSV had done to him; I couldn’t bare to watch him get any worse. When he died I had to face the overwhelming reality that nothing could’ve ever prepared me for the loss of a parent, no matter how sick he was or for how long. I felt so stupid for even thinking I was ready. And as someone who is always right, stupid is my least favorite way to feel. The unexpectedness of my emotion hit me like a shovel to the back of the head; I quit my job 6 weeks in, I lost all interest in leaving the house, and when I did manage to get into my car, I’d have trouble getting out of it. A couple of times I fell asleep parked in my garage—unable to muster the energy to walk 50 feet from my tandem parking spot to my back door.
It’s been a year since, and while my emotions have mellowed, I am accepting that this grief is something that will be a part of me forever. Sometimes it feels like the last memories I have with him are haunting me: having to watch him cry out of frustration, listening to him stutter over my name and ask me how old I was, the few times he’d have trouble recognizing me when I walked through his door. No part of this situation is fair; it feels like he was robbed of his life and I was robbed of a life with him. What keeps me sane, though, is being able to remember the good times: eating cheeseburgers on the patio of his care home, bringing him back to our house to play with our dog, introducing a boyfriend from Chicago and watching him get to play the ‘protective dad’ role for the first time—something he held with him in sickness and health.
Looking back, I can so clearly see that he didn’t let his condition stop him from teaching me the lessons he’d planned on teaching me over the course of what we thought would be our long lives together. Every time I make an uncomfortable situation bearable by cracking a joke, I hear the laughs my dad would command from a hospital bed. As doctors and nurses poked, prodded, and inflicted immense pain on his already fragile body, he’d somehow find a way to erupt the entire room in laughter. The days I want to stay in bed and refuse to get up, I feel the strength with which he rose out of my car after learning his illness had robbed him of the memory of his parent’s death, pretending to be okay for my sake. When I am confronted with obstacles that seem too difficult to conquer, I see each of the attempts he took to write me a single 7 word note. Over the course of an 8 year long disease, my dad showed me a lifetime’s worth of strength, positivity, humor, and perseverance.
This Christmas, my aunt gave me a short story that my dad wrote when he was my age. The piece reads so sarcastic, bitter, and comedic, that the only way I’m able to distinguish it from my own writing is because it’s actually really fucking good. I truly am the 2019 version of my 25 year old father: slightly less talented but equipped with a twitter which inherently makes me ten times more obnoxious.
In the story, he works his way through the negativity and concludes with:
“We have the ability to make life difficult or to make life easy. Our mind is an astonishing piece of work. It can get us sick, it can make us well. It can make us happy, it can make us sad.
Who can turn the world on with his smile. Who can take a nothing day and suddenly make it all seem worthwhile. Well it’s my guy, and I should know it, with each glance and every little movement I show it, Love is all around no need to waste it, I can have the town. Hey you crazy Knucklehead, why don’t I take it,
I’m gonna make it after all.”
6 months after his death, and in the form of a single paged story and a Mary Tyler Moore quote handed to me on Christmas Eve, my dad taught me his final lesson. And now, after somehow making it an entire year without hearing his voice, I know that I, too, am gonna make it after all.