That’s Alz, I Want To Say! Understanding Alzheimer with Vasundhara

That’s Alz, I Want To Say!

It was the summer of ’91. Delhi was abloom with oranges, pinks, reds, yellows, and whites. Temperatures rarely soared over 40. Cool mornings, utterly hot afternoons, and surprisingly pleasant evenings were characteristic of summer back then. Yes, there were occasional anomalies! All in all, it was a time when summer was enjoyable, albeit only early in the morning, and evening.

Yes, it was summer! Thanks to the two-month long holidays, I found myself in Delhi, at my grandparents’ home. It was fun and frolic. It was a mirthful two months! Yet, ’twas summer. So most cherished were the evening walks and the play in the beautiful parks, and the afternoon story sessions, in truth held to reign in us mischievous monsters of children.

It was on one such hot summer afternoon that it decided to come calling.

Our mothers and aunts were trying to keep us indoors. They told us all sorts of stories. They chatted about everything under the sun. Suddenly, my mother realised that my Nana is not to be found! It was a big house and everyone, all at once, ran hither thither to look for him. Yet, he was nowhere to be found.

Nana did love going for long walks, but that was in the evening. It was now but 3 in the afternoon! My mother took off in search of him. While she was away, I remember the others at home working the phone (landline!). Exactly thirty minutes later my mother returned with my Nana. He seemed dazed. I heard the elders talk to each other in hushed tones, “He had fainted two blocks away from home, on his way back from the dentist?”

Now all adults took charge of the situation as we children sat wondering, trying to get to grips with what just happened. I don’t remember anyone explaining to us what did. A few of them were gently  reprimanding him. Nana seemed to understand what they said, but only in bits and bobs. He looked rather apologetic. Yet, as I saw the look on his face, I realised he’s sorry for what just happened. That he’s trying to say, “I don’t know. Why will I?” His eyes, they spoke. They spoke of his befuddled state but his tongue refused it’s office.

Dialling back, I realised twenty years later, what had happened that hot summer afternoon.

There it was. Right there. The sneaky devil with many forms and names. It’s been going around the  world since ages and preying upon people, especially the old. It does catch people in their early sixties too! Well, every now and then when it fancies so. It’s a shapeshifter. It can make you believe almost anything, a lot like Ka in the Jungle Book! Oh and it’s an artful logic-dodger. It’s the master of make-believe!

It loves to spring unpleasant surprises. It creeps up from behind when you least expect it. This hidden, fierce brute. It is rather sly. It is a lot like a chameleon. It changes colours by the second! This trickster. And once you’re in its grips, there is no way out. Bit by bit, day by day, it gobbles you up! A crunch here, a lick there. A slurp there, a munch here! Slowly, yet surely, it gets stronger as you grow weak.

Did you know it is a master thief too? It robs its prey off their memories and manners. It loves to steal speech and vocabulary, one word at a time. It snatches physical strength. It gets hold of one human faculty after another. It burgles your peace. It disorients you. It takes away your smile! It can drive away your friends and scare away your loved ones! It can blow away your comprehension, your power of retention. It can loosen your grip, send you back to the crib. It robs you off your elements.

Quite a scary beast, to say the least! I had quite forgotten about it. A vague mention here, an odd story there. That was that, until one fine day, it decided to come knocking on my door.

Like a tornado it blew me off. For such it is.

Meet Alz. One of the many terminal diseases in this world— incurable, irreversible, untreatable, unstoppable, incorrigible diseases. It is a progressive, neurodegenerative disease that causes brain cells to die. Alzheimer’s aka Alz is so unforgiving that by the time its prey, well, it’s patient reaches their end, their brain becomes the size of an orange. This, you will note, is due to the death of brain cells…one cell at a time.

Yet, all’s not that dreary and dark in the world of Alz. Sometimes, Alz can be poignant and funny in the same breath! There’s many a silver linings to the beast called Alz. I have a sneaking suspicion I’ve discovered one such. And I know I am not alone. Many like me have discovered the silver lining to their Alz cloud. Some have discovered it in good time, some late. I suspect everyone will. One day.

Each year, September 21 is observed as World Alzheimer’s Day. There are many people around us who are silently struggling with this monster of a disease. More than we can imagine. There are many more who are seeing their loved ones slip away, one day at a time.

Observance of this day creates awareness about Alz. It raises a debate about the rights of Alz patients, their caregivers, the need for a cure, and most of all, the need for empathy and love.

Look around. Do you know someone who has had an encounter with Alz? Did they, or did you, find a silver lining to the Alz cloud? Would you want to know about the silver lining I found? Do let me know what you think!

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This beautifully moving and personal piece has been written Vasundhara Bahuguna on our request, in a bid to raise awareness about and challenge the stigma of the dreaded Alzheimer’s disease on the occasion of World Alzheimer’s Day observed on September 21 every year. Vasundhara has been
a primary caregiver to her mother, a patient of Alzheimer’s, for the past eleven years. She is writing a children’s book on Alzheimer’s and its hidden silver lining that all caregivers (must) inevitably find. 

Vasundhara is a lover of art, literature, music, sport, travel, and nature. She brings a unique touch to stories whether it is narration, performances, voiceovers, adaptations, or writing. She has started a storytelling project, Aao Suno Kahaani with a friend who is a veteran storyteller and dastango. Vasundhara is translating her grandfather’s works in Hindi, to English.