The story of Anusuya
We thought Dad was being lazy or moody… I wish now I’d understood his rare disease
It’s been 12 years since I lost my father to Progressive Supranuclear Palsy (PSP), a rare brain disease that has no cause, treatment or cure. He was just 67.
I wish I could reset his last years and do more for him, but at the time we had little guidance and support to understand his condition. Now, my misgivings and guilt hang heavy on me.
It was like navigating uncharted waters. The initial confusion over diagnosis, ongoing battles with ever-changing symptoms, the relentless uncertainty … it was a rollercoaster that extended far beyond the medical condition. It was a collective journey of despair, isolation and emotional tolls. The struggles tore into every aspect of our lives, impacting relationships, emotional well-being, and even financial stability.
PSP is extremely rare, affecting about six in 100,000 people. The symptoms mimic Parkinson’s, making it difficult to diagnose. PSP occurs due to damage to brain cells. These cells control our nerves, which ultimately control the muscles.
It’s amazing how many muscles we don’t even think about until we can no longer control them!
It all started with inconspicuous signs – a subtle imbalance, a deadeye stare and general apathy and irritability. Little did we know that these were just the beginning of a spiral into a world of helplessness.
Imagine the struggles of a visibly healthy person with no peripheral vision (we learnt later the problem can’t be diagnosed by regular eye specialists) or with severe balance problems (this again, can’t be diagnosed by orthopedics), being repeatedly dismissed by doctors for not putting enough effort.
My father, a dynamic go-getter, rose from humble beginnings to become one of the top executives in India’s foremost business chamber. He was widely travelled and extremely well-read. His progressive thinking and love for knowledge shaped our family dynamics. From heated dinner table discussions on geopolitics to his insistence on books over toys, his influence was profound on our lives from childhood.
From there to the days when he wouldn’t open his newspaper bundle to the blank look on his face in his last days. It was heart-wrenching to see the person we once knew to what he had become.
Imagine a person’s horrors when he can’t remember basic things like how to take a bath or button up a shirt. Or suddenly realize that he can’t read, write, or frame a conversation. Maybe he thought he was losing his mind.
He needed support, but we thought he was being lazy. He became withdrawn; we called him moody. His eyes seemed unfocused; we thought he was drinking.
As it is, the world of communication was fast shrinking for him, and we in our ignorance made shrink it faster.
Imagine the horrors of a person prisoner in his own body, unable to communicate his pains, emotions and confusions.
Over the years, his executive functions slipped away one by one, until he was confined to bed, unable to move, talk, swallow, or even blink.
Imagine a life without blinking!
At times, he would want to talk. But what did he just say? We didn’t know. For, it was impossible to make sense of his mumbles.
When we spoke to him, he stared back. Did he understand what we just said? We didn’t know.
Sometimes he nodded, often he didn’t. His eyes were wet always, tears rolling down his cheeks due to no blinking.
Or was he crying? We didn’t know.
He clutched at our hand when any of us sat next to him. His eyes were blank, his face a mask. He couldn’t smile, couldn’t talk, couldn’t blink and was dependent on us for everything.
Of course, blinking and smiling were things we couldn’t do for him.
But I am sure there were things we could have done better if only we had a little guidance and support.
And guidance and support we had very little. Not from the medical fraternity. Least from the society. Suddenly we were shunned by relatives and neighbours as if we had done something shameful, as if we were harboring a criminal at home.
Over the years we consulted countless doctors, including at top medical institutes in India and even the US. The verdict was always the same – either “he is not trying”, or “you are labelling an elderly parent a mental case”. His memory was intact, so Alzheimer’s was ruled out. Parkinson’s medicines were not working.
When he became bedridden, the responsibility of his care fell on my mother, already struggling with her own health issues. She had no life other than taking care of him, and nobody to talk to other than us. My siblings and I chipped in whenever we could outside of work. Life was chaos – doctor visits, tests, and internet research consumed our days. I even left my eight-year-old kid to take care of himself pretty much.
That one year was a blur!
The diagnosis of PSP came barely three months before he passed away. And suddenly every piece of the puzzle fell into place – every issue that had been bothering us for years.
But even post-diagnosis, PSP is a horror because there is no treatment. The worst is the disease doesn’t take away the person all at once but kills them bit by bit, and you mourn the loss each time. Like we always said Dad is better today because tomorrow will be worse — he will lose the ability to do yet another thing.
It’s been 12 years, but the misgivings remain as fresh.
There are so many what-ifs that buzz through my mind — what if we had researched more, what if we were more understanding…
Looking back, I think counselling would have helped us cope better. Sadly, a decade ago, mental health didn’t get the kind of attention. Mom was never the same after he passed away. She became withdrawn, neglected herself, and eventually succumbed to the weight of guilt within a couple of years.
The rest of us chose to compartmentalize and move forward. The demands of daily life, from paying bills to raising children, took precedence.
Personally, undergoing therapy recently has provided some solace, yet it simultaneously amplifies the lingering misgivings — the hundreds of what-ifs. What if we were more understanding of Dad’s struggles, what if we were more kind to Mom, what if I was more patient with my child, my husband and siblings. And even myself.
After years of keeping our journey locked away, I find the courage to open up. Our increasing awareness and understanding of mental health, particularly with the pandemic encouraging a more open dialogue about these challenges, make it a bit easier. It’s crucial to recognize that feeling helpless is okay, seeking help is okay, and above all, talking about the related mental health struggles is also okay.
Globally, over 400 million people are affected by rare diseases. In a world where many of these diseases are not widely understood, my plea goes beyond our personal grief — it’s about all the families grappling with rare diseases, often without enough awareness or support. There might not be a cure, but understanding, empathy, and a shared commitment can make the journey a bit easier.
Together, through our stories, let’s break the silence and create a bridge of compassion for those facing the challenges of rare illnesses.