A message on the running text-thread between us Harris cousins pops up on my phone. 

Angie: The results of Vance’s autopsy with the Mayo Clinic’s Brain Bank are in.

I almost gasp at the mental image of a “Brain Bank” – a collection of brains and cerebral matter in a highly-secured compound.

My uncle Vance died of an extremely rare degenerative brain disorder called Progressive Supranuclear Palsy, or PSP. Its onset is devastating – resulting in the gradual deterioration and death of segments of the brain. We thought it was Parkinson’s at first, as we observed Vance’s quivering vocals and shaky hands. The neurologists thought it was Parkinson’s too. Until it stopped looking like Parkinson’s.

Vance’s ability to speak, swallow, focus his eyes, express emotions or respond to others’ emotions quickly diminished. The one time marathon-runner, hiker, and world traveller struggled with his balance, often falling backwards into the supportive arms of his adult children. My uncle, who had always been a larger-than-life personality – a great storyteller with a sweet vulgarity and a surprising tenderness toward others – suddenly seemed trapped within the confines of his dying neurological system. A lover of history and reading historical volumes now listened to Ron Chernow’s Grant on audiobook with the Skullcandy headphones his grandkids had given to him because his eyes had lost the ability to focus on fine print.

At their last parting, knowing it was their final goodbye, my father hugged his big brother and clapped a hand on his shoulder, saying, “Well, I’ll see you in Paradise, brother.” I wondered if a spiritual paradise was too sweet a promise for someone living in a physical hell. Vance would ultimately make the decision to starve to death rather than prolong his suffering with a feeding tube. He chose the former partly I think because he could not imagine his life getting any smaller.

Progressive Supranuclear Palsy is so rare that, of course, Vance’s brain belonged in the Mayo Clinic’s Brain Bank. His children agreed to help medical researchers better understand the disease by donating the organ that made their father their father, the organ that so utterly failed him in the end. The Brain Bank has another, more unexpected ally: a major network television series called Zoey’s Extraordinary Playlist. In the show Zoey can hear other people’s thoughts through song. PSP is so uncommon – only 3 to 6 people in every 100,000 worldwide are diagnosed, making it much less common than Parkinson’s – that it receives extremely limited research funds. But when NBC produces a flashy musical sitcom-dramedy featuring well-known Broadway and Hollywood actors, it raises public awareness … and, hopefully, the dough needed to find a cure.

In Zoey’s Extraordinary Playlist, the impossibly eyebrow-endowed actor Peter Gallagher plays the lead character’s father, Mitch, who suffers from PSP. (The show’s creator, Austin Winsberg, lost his own father to the disease.) Like Vance, Mitch is a handsome, charming septuagenarian with a loving wife, two grown children, and a successful business. Mitch has been struck with the illness in his prime. Similarly, Vance went from being an active grandfather to unable to walk in a matter of months.

Gallagher’s physical acting is remarkable. He fully captures the PSP-afflicted body: the unfocused gaze, the slack jaw, the mouth that gapes open and shut like a fish out of water. An early symptom of the disorder is losing control of eye movements, so Gallagher often holds a distant stare that seems to convey a lack of interest in conversation when quite the opposite is true. There are small details only PSP families would understand: the constant dabbing of saliva from the mouth of a loved one who can no longer swallow. The persistence to carry on conversations with someone who cannot respond. The constant fear of a loved one falling down or aspirating food into their lungs.

Essentially, Mitch’s story arc is about suffering – physical diminishment, humiliation, the slow loss of one’s self and identity as an able-bodied and engaged person, and the long goodbye his family faces throughout the first season. The heartbreaking “normal” lives of PSP-affected families is portrayed with honesty (although since it’s Hollywood, this family lives in an aesthetically pleasing multi-million dollar San Francisco dream house).

Occasionally, per Zoey’s extraordinary gift to hear others’ thoughts through song, Mitch is able to step out of his PSP-entrapped body and gracefully dance and sing to pop or rock ballads that only his daughter can see and hear. This is the great joy of the show: that Zoey’s father is able to pause his Progressive Supranuclear Palsy reality, even if for mere moments. 

Vance didn’t get this sweet break from his disease. Every time I watch these musical interludes featuring Mitch, I wish so deeply that in his miserable final year, Vance was afforded such relief from time to time. That my cousin Angie could have experienced a moment of being held in her father’s arms as they danced to the Isley Brothers’ “It’s Your Thing.” That my aunt could’ve been serenaded by his crooning of “Moon Dance.” Instead, the only way Vance moved out of his PSP-riddled body was to transition into the next world, the paradise where my father promised to meet him one day.

In his “heart song” to Zoey, Mitch warbles Cyndi Lauper’s “True Colors.” The lyrics are bittersweet. The last time I saw Vance was a handful of months before his passing. and by then, he seemed a mere shadow of himself. There were moments when his own true colors were shining through – the energy and familiar inflection in his voice as he greeted me at the airport with “Hey Lib!” and pulled me into a hug, his mischievous wink as we shared a bit of family gossip, the “you-gotta-read-this” motions toward his copy of Grant, and the fact that he would give precious hours that remained of his life to listening to yet another Civil War text.

When Angie texted all of us Harris cousins the final results of the Mayo’s Brain Bank autopsy, they were staggering. The Chief of Diagnostic and Clinical Neurology found in the pathology report signs of PSP … along with both Parkinson’s and Alzheimer’s. His brain was literally riddled with disease. The “good news” for our family was that the doctors did not believe this was caused by genetics. Just horrible fucking luck. Jesus, I exhaled as I read the news, not knowing whether it was said in prayer or in vain.

Vance died nearly two years ago, and NBC recently cancelled Zoey’s Extraordinary Playlist. The show’s fans are clamoring for the show’s return and fervently hoping an online streaming network might pick it up. I assume most people are advocating for its renewal based on its unique, musical storytelling and because no one likes ending on a cliffhanger. But the PSP community’s desires run even deeper: they would like to see a show that educates the public about the disease – that tells the story of a family affected – stay on the air. I will miss the show’s depiction of genuine, quiet human suffering and grief.

Zoey’s Extraordinary Playlist is full of relational melodrama and fun pop musical numbers, but it is essentially a show about suffering – Mitch’s physical deterioration and the family’s slow severing from him in their world. It depicts an inherently Christian worldview – that Mitch’s suffering is not something he can overcome through practice and thoughtfulness. There is no way around, only through. Like Mitch, like Vance, who agonizingly retreated into unrecognizable shells of their former selves, Jesus ended his earthly existence not as the anticipated, conquering hero messiah, but in humiliation and nakedness, crying out in abandonment from the Father.

For the fictional Mitch and the very real Vance, there was no morality lesson to be learned in their suffering. In one episode, Mitch describes his impending death: “Death is hideous and ugly and grotesque and wildly, wildly unfair. Or maybe death is beautiful and spiritual and transcendent and sometimes a very necessary and very freeing escape from our physical bodies when they are no longer habitable.”

In Zoey’s Extraordinary Playlist and in my family’s experience, suffering is inescapable, but paradise (as my father called it) is a promise. We never see Mitch’s afterworld in the show. We see him in a tuxedo gently enjoying one final dance number with Zoey as a cello plays “True Colors” before he goes into the shadows off-stage. Mitch is more than just fully himself – he is movie-star handsome (thanks, Peter Gallagher). In that scene he has escaped his PSP-limited body and is able to impart loving words of wisdom and comfort to his child. But Mitch is also gone, and has left in such a painful way.

During my final visit to see Vance, he was eager to show me the property where he first lived when he made the move to Salt Lake City. Vance was a farm kid at heart, born and raised in southeastern Minnesota and living most of his life in Mason City, Iowa. He only landed in Salt Lake City to be near his adult children and grandkids in the final decade of his life.

Behind Vance’s house were some open fields with a few horses and the Wasatch Mountains in the distance. “It’s beautiful, Vance,” I commented. He quietly nodded. The degenerative impact of his PSP was noticeable. I could sense his exhaustion and frustration as his speaking ability failed him.

While Vance had seemingly exchanged the open plains of his youth for the mountains in his later years, I noticed his eyes, when they were able, focused on the open skies with its watercolor blues and wisps of clouds. In some ways, that farm kid had found his way home again to tree-less, uninterrupted blue. I imagine Vance found his way to a similar Paradise when he made his completely unmusical exit from this earth. Vance loved beautiful places. He died in a beautiful place on his own terms, his true colors shining through.