Ode to a manic pixie boy
The story of a “special” child
I want to tell you about Prasad. He’s my uncle. I call him mamu.
Mamu is 6 going on 40. That means his brain is that of a 6 year old child, but his body is 40. He’s mentally challenged. They call it being “differently abled” now. They say he’s a “special” child.
He learnt how to sit up at the age of 6 and walk at the age of 11. I was born 15 years after Mamu. We lived in the same house for 15 years after that, and though I soon outgrew my nursery rhymes, he still sings, “Look at the moon, she’s shining up there”. Because Mamu doesn’t grow up. He just grows old.
For the past 7 years, he’s been living away from me with my grandmother at my hometown where he has better access to personalised healthcare.
Every time I visit Mamu, we play a game where I surprise him in the doorway, and he pretends to be a big cockroach by tickling me to fits. It makes him laugh.
When I play hide and seek with Mamu, and it’s his turn to hide, he sits on the sofa and hides his face behind a pillow. He thinks that if he can’t see me, I can’t see him too.
I bought a toy piano for him from my first salary a few years ago. He now plays the piano everyday at 10 AM.
Mamu hates walking. We have to invent new games to trick him into walking everyday. We usually pretend to be a train and chuck-chuck along. That gets him to walk.
When someone cries around him, he pats their head, wipes their eyes, and makes consoling sounds. But Mamu doesn’t know what crying means because he’s never cried (not even when he was born). He picked up on the social cues by watching others.
Mamu can tell the time without looking at the clock. Even if he did look, he doesn’t know how to read a clock (or anything at all). We’ve never figured out how he knows.
Mamu’s favourite colour is pink because he didn’t learn about gender stereotypes. Here is a picture of him rocking his pink Disney bag.
Mamu wakes up everyday at 7 to listen to the aeroplane take off from the airport nearby. He once said we should drive our car through the clouds. Mamu’s imagination knows no bounds.
Mamu shares his food and insists on eating with the whole family everyday. If you offer him a slice of apple, his first question will be, “Did you eat it? Did Kamal eat it?” Kamal is our domestic help.
One day, when I wasn’t looking, he had taken my helmet and put in on. He wants to be just like us. He mimics our actions often.
Mamu asks every question at least 4 times. “Radhu, tomorrow is a Thursday right?” “Yes, Mamu.” “Tomorrow is a Thursday right?” “Yes, Mamu.” “Right?” “Yes, Mamu.” “Right?” “Yes, Mamu.”
Mamu has a photogenic memory. He reminds everyone to take their medicines, remembers everyone’s birthdays and appointments, and he never forgets. Sometimes I wish he would, because he still remembers my ex-boyfriends names. Now, I think twice before introducing him to a boyfriend.
Mamu is always laughing. Mamu is always happy.
Yet, in the past, self-proclaimed religious “God”-men have foretold great misfortune upon our family because of him. But there is no need to foretell crisis because Mamu is always sick.
Either he has a cold, or he has an upset stomach, or he has contracted an infection or allergy, but he’s always unwell. And he’s always unable to express it. So, we have to notice the smallest aberrations in his daily routine to diagnose illnesses.
From the past couple of years, Mamu has been growing smaller and smaller. He’s been losing weight, becoming more frail, more pale, more weak.
Mamu has been slowly losing his vision. Now he is almost fully blind, except he can tell if its light or dark through one eye.
He’s had two eye surgeries in the past when he was much younger and stronger, but it was nearly impossible to take care of him afterwards. For 6 months post-surgery, nothing was supposed to touch his eyes, or they would get infected and would have to be operated on again. But Mamu doesn’t understand this. He is a child. He rubs or pokes his eye accidentally everyday. For days, then, after the surgery, we had to keep his hands tied together behind his back during the day, and strapped to the bed at night, even while he protested, and we could do nothing but watch. Believe me when I tell you this — Nobody deserves that.
We’ve consulted the best doctors, but an eye transplant is out of question now. Operating on his eyes again would be like changing a light bulb the wiring of which has become faulty. His nervous system can’t handle it. Because Mamu is now weak. His immunity can’t handle it. Because Mamu is always sick.
We have tried every best-rated remedy. But blindness doesn’t care for 5-stars. Blindness eats one up and makes us watch as helpless spectators. Mamu is learning to get around the house by keeping his hands outstretched in front of him to search for walls and support to hold on to. He falters when he walks and falls down often. But I can’t come to his rescue because how else will he learn?
Now when my sister and I play with him, we can even lift him up in our arms like a child. He weighs like a feather .Now when I visit him, he no longer recognises me in the doorway because he can’t see me standing in front of him till he hears my voice and realises I’m there. I miss my cockroach.
Last month, I was visiting my grandmother and him. It was peak summer, and the temperature was soaring at over 45 degrees Celsius. It was so hot that we found a pigeon dead on our balcony due to the heat wave.
The next morning, I was woken up by my grandmother’s scream — “Radhika! Come to the living room fast, Mamu has fallen down unconscious!”
Hardly realising if I was still dreaming or awake, I dashed as fast as I possibly could in a half-reverie to the living room.
Mamu was lying on the floor, unconscious, his eyes not fixed upon anything. I tried to lift him up, but his whole body had suddenly become very heavy and limp; I wasn’t able to even lift him.
I ran upstairs and called for my sister, uncle, and aunt. We all tried to lift him up and hold him by his arms, but his knees gave way, and his neck wasn’t supporting his head. So there he was, being supported between the four of us, his limbs and head bent in all the wrong directions.
After getting him into bed, dialling the doctor who said he’d be there in a couple of hours, we finally got him to drink some water and put him to sleep.
I don’t know how long I sat next to him, holding his hand, watching him sleep, fixated on nothing but his little chest heave softly up and down as he breathed. It must have been a couple of hours. And the whole time, all I could think of was the dead, limp pigeon on the balcony.
When he woke up, he seemed fine. He didn’t know what the whole fuss over him was about because I don’t think he realised that he had fainted. He smiled wide and said to me, “I’m all right, Radhu. I’m okay.” And he was.
I want him to be okay always.
How is a boy who is always sick also always happy?
When in children’s stories, they write about manic pixie boys, they’re writing about boys like Mamu.
Most people don’t know it because most people are too involved in their own lives. The animals know, though.
My sister’s pet was a ferocious female dog that never stopped barking, and had to be always kept away from Mamu. Once the dog somehow escaped into Mamu’s room when we weren’t looking. When we finally looked in his direction, the dog was sitting quietly on Mamu’s lap, licking his cheek, wagging her tail.
That dog. She knew. Animals always know.
Mamu makes me want to be stronger for him because it gets harder everyday. He makes me see beauty and innocence in a polluted world everyday.
We save each other. Everyday.
He is a lasting tribute to the finest qualities of the human spirit. How do I pay tribute to a boy like this?
