“Knowing pain and pleasure in all their variety, and seeing his life not yet decline, a wise man should know that to be the proper moment… while the perceptions of his ear, eye, organs of smell, tasting, touching are not yet deteriorated… man should prosecute the real end of his soul.”  Excerpt from Jain Scripture

Looking back, we think he knew that time was running out. He was always practical, never one to show his emotions; he would rather let logic dictate his inner conflict than worry any of us. We never knew his death was on his mind until my uncle found the letter.  It was dated sometime in 2010, discovered while going through his things in the office they shared at the family business in Lawrence, Massachusetts. In it were clear instructions that it not be opened until the time of his death, and only then in the presence of his immediate family.    In perfectly legible, almost mechanical handwriting, he wrote a rudimentary will requesting we divide up the assets evenly amongst ourselves; this was his way of saying goodbye before we even realized he did. His family was the real end of his soul, and this act his prosecution.

“Your dad’s really slowed down,” my uncle noted. I noticed too.   It was 2013 and I hadn’t been home in a while. There was a slight shuffle to his gait and slow heavy steps up to his bedroom. Back then I figured time was catching up to him, as he was 68. Hindsight is 20/20, but it has a way of making us feel foolish.  “He’s just more tired easily, probably normal for his age,” I told myself. Nothing in my medical mind was ringing alarm bells. Eighteen months, many falls and my younger sister’s more attuned knowledge of neurological issues proved otherwise. A simple diagnostic assessment in her New York City apartment on a visit in late 2015 got him an appointment at Brigham and Women’s in Boston.

Corticobasal Degeneration Syndrome or PSP, it was hard to say according to his doctors. We called it CBD, until it was closer to the end, when it became obvious that PSP was the culprit. Semantics to some, but important to know for the physicians in the family including myself.  The curse of knowledge is thinking others will understand. PSP is a sadistic polymorph – make a plan, and it laughs back with a new challenge. It moves so fast that it often leaves everyone scrambling to keep up, guessing on the next move, how to accommodate and how to cope. PSP is the ultimate Grandmaster, and we were all simply picking up the pieces in the wake of daily lessons.

Another thing about knowledge – having too much is incapacitating. It drained me of hope, because I knew that nothing would stop this train. The clinical trial, the alternative therapies, the Sinemet, the weekly massages, the physical and speech therapy – none of it really mattered in the end. I told myself this so when the day came I wouldn’t be hanging on to fantasies of a miraculous recovery.

My subconscious knew otherwise, and in my dreams he would be talking to me about my issues, like he always did – first by listening, then taking a long pause, followed by a few carefully chosen words of advice, clear in their intent and short in their delivery. I missed the dad I had before PSP took over. The dreams left me wanting him back.  Truth be told, everyone in his life wanted him back, but we carried on because we had each other.   Our mom stood by his side with her daily vigil, her routine of getting him up, fed, bathed, clothed, shuttled back and forth to countless appointments, and taking him on trips to Boston to see family and friends until it was no longer possible.

My older sister and brother-in-law, just down the street, whose lives were turned upside down, sideways, inside out and right side up again, never wavered despite the Sisyphean nature of their efforts.  The countless offers by our extended family network – uncles, aunts, cousins – we were overwhelmed with the support, and the safety net was palpable. A phone call was often all it took to have a half dozen people be ready, willing and able to show up, offer physical help, a place to stay, anything.

The angels from Lillies of Hope, caring for a wheelchair and bed-bound man who barely weighed 90 pounds by the end.  In the midst of the pandemic, many last goodbyes were made possible by Zoom.

I’m very fortunate that I got to hold his hand and look in his eyes when I told him he was my hero. At least I think I did, because all I really remember is my tears drenched his shirt.  I could go on because his legacy deserves so much more. Born in India. Made In America. Fearless entrepreneur. Father, husband, brother, mentor, friend, confidant. There is an untold epic in Kodachrome slides and Google Photos. One day I’ll get to it.

One more chapter – a legacy in patient-centric research initiative with CurePSP and the Mayo Clinic in Jacksonville – can still be written.

One day we’ll understand PSP, and that is our vision for this fund. We want to provide hope that the curse of knowledge does not go unbroken.