• Pallavi Rao

Just For One Day

And sometimes, you just tire. Not only because of the weakness that Myasthenia Gravis gets with it, but generally.

Today seems one of those days.

When you are tired of

  • the same strict daily routine of months

  • the super nutritious food from morning to night

  • the timely insulin shots

  • the regular exercise and meditation

  • remembering popping pills and steroids and multi-vitamins and micro-nutrients, as per the phone alarm ringing virtually every hour

  • ensuring the daily dose of raw food and juices and 2 to 3 litre of water intake

  • somehow including a 5 to 20 minute walk in the living room so that circulation of blood is intact in the legs

  • managing time all the time.

  • multi-tasking

  • looking after myself-trust me THAT is a full time job.

  • coordinating school and other picks and drops

  • juggling classes for the child so that we manage a ‘us time’ apart from the new found ‘H.W.time’

  • the n number of doctor visits and regular medical tests-Try sitting in the OPD for 5 hours at each doctors, to know how it feels.

  • Doing office work from home-which includes meetings too, like the one I am waiting for right now. But hey, since I am working from home, the person I think has decided, it is OK not to be on time. “Ghar par hi to hai!”

  • And since ‘ghar par hi to hai’, my dear Ranjana and Mariam,  need only my help and advice, for daily household natak-bathroom ka nal leek kar raha hai, aquarium ka paani change karna hai, aquaguard wale ko bulana hai… to kya main panna lekar nal theek karun? I feel like screaming back.

  • Forever being self conscious. Am I slurring more today? Has the congestion increased? Is the tiredness more now than it was in the morning.? Why is it paining here? When will I start to see perfectly well without these forever, watery eyes? Does the face seem more swollen today? Am I breathing fine?  Do I call Dr. Kohli or should I call Dr. Chawla? Should I go in for the nebuliser or the BiPap machine?

  • Trying to be perfect in everything. A DNA malfunction that I cannot fix.

And then you tire of being an inspiration too. Now, don’t get me wrong. I am writing this straight from my heart and am hoping you would understand.

When so many people tell me I am a source of inspiration, it is overwhelming indeed. Yet, not that they expect it, but it makes me immediately put on an extra layer of bravado. Is it to  not let them down? To meet expectations? Or is because I have truly become brave? I don’t know yet.

And so there are days like today when I just don’t want to do any of the above.

I don’t want to

  • be a fighter

  • be an inspiration

  • be a disciplined person

  • be the extra careful patient

  • be the good girl

I want to maybe for a day chuck all medication away. Not sit in meditation but get completely lost in a mall, not bothering about crowded places and infections.

I want to have dollops of anjeer and tender coconut ice-cream from Naturals without batting an eyelid. I want to devour macaroons of La Opera and Banoffee Pies from Big Chill, not caring a shit about the sugar levels. And yes, have at least 3  mangoes at a go, the way I used to eons ago.

I want to, for one day, have a chilled water shower as  in the days of yore. I want to enjoy the AC in my room without having to wear a thermal or socks and full tracks along with a soft cotton neck wrap in the month of April.

I have this terrible terrible horrible urge to guzzle chilled beer sitting on a bar stool at a pub all by myself or by the beach in Goa or simply in my terrace garden, without worrying about combining medicines and alcohol or about catching a cold.

I want to get back to my clothes of two years ago effortless and not huff and puff as I try to get into them now, only to finally settle into an XL of Fabindia. Fabindia fans would know what that means to a woman.

I want to have a face that is clean of black patches and hair on my chin and cheeks that make me resemble Wolverine.

I want to kohl in my eyes, as normal girls do.

I want to get into my knee length skirts and shirts without the thought of  ‘boodhi ghodi laal lagaam’ cross my mind as I look into the mirror.

I want my straight silky hair back and not the 440 volt struck frizzy brittle hair that makes me seem like I just saw my class 9 math paper result!

And yes, I still haven’t thrown my jeans away, I want to get into them comfortably and breathe too.

I want to climb up and down the stairs with effortless ease and not ration them. I want to sing along ‘the shape of you’ without gasping for breath as if I attempted to singer Shankar Mahadevan’s ‘breathless’. Pun intended.

I want to wear my high heels the way I used to and not settle for the half inch make belief heels that do nothing to my being or confidence.

I want to get back to my sexy sarees and blouses and the endless collection of necklaces that which  if I wear now, I feel I am a chained inmate of kala pani. They weigh a tonne and look horrendous on my now short, big , fat neck.

I want to for today, speak non-stop without a slur and without beginning all conversations and meetings with a statutory explanation to my spanish accent.

I, just for one day want to be the way I was.


Ranting. I know.

But, just for one day. Let me.

As I get back to my next set of tablets and nebuliser, I once again say, more than a silent prayer- that medical scientists across the globe find a sure shot cure for Myasthenia Gravis. For me and for all other snowflakers.


Real soon.

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