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The Miracleme Story 02-Transmission Kharaab Hai

I was now dripping wet.

Only nursing mothers would know what it feels like. Lousy. Exasperating.

And on a sweaty August humid monsoon day, it felt crummy.

breastfeeding-or-bottle1

A drive from Apollo hospital in Sarita Vihar to home in Sarvodaya Enclave.

Radio Mirchi was playing “My Dil goes Mmmmm…” from Salaam Namaste. But my heart was going more like ‘Dhak Dhak karne laga!”

Of course, I can have a sense of humour at my own expense now, after so many years. But at that moment 11 years ago, nah, it did not sound much fun.

What was the term he used?

Myasthenia Gravis. Huh, it sounded Greek to me. And guess what? It was Greek!!! A Greek and Latin word.  Ha ha…Extreme or grave muscle weakness.

MG is rare and only affects 14 to 20 people out of every 100,000

Dr. Suri, had explained at length what it meant. Both, what it meant scientifically and what it meant to be a Myasthenic (there that is when I got labelled!). With a diagram he illustrated how at the nerve endings are muscles and how when they stop communicating properly to one another because of something called acetylcholine, messages did not pass well and the muscles weakened leading to symptoms like breathlessness, weakness of the extremities like the hands and fingers, feet, eyes, facial muscles, etc.

Basically, the transmission goes haywire.

He went on to explain how we all are born with the Thymus gland. I vaguely remembered drawing this particular gland in our biology chapter of internal organs.

He scribbled what seemed the map of India, only to realize it was a vain attempt at drawing the neck and chest region of the human anatomy. The Thymus gland lies beneath sternum. It is extremely important in providing immunity in children. But as we grow up its responsibilities diminishes and it decides to take a premature retirement from work.

But, no….not in my case. The Myasthenics you see. Here they decide to come back in action full on and create havoc. In women, generally in their 30’s or during a hormonal change and in men in their 60’s.

MG typically occurs in individuals over the age of 40

He assured us that it is something we could control through medication. Aaah, said Rahul and I with a big smile. Then we had nothing to worry about. Or so we thought.

 

Treatment for MG consists of symptom management.

 

He continued. “However, we need to monitor it carefully. Sometimes, only sometimes Myasthenia Gravis is accompanied with Thymoma.

Moma??? Anything ending with Ma sounded DANGER. Carcinoma. Lymphoma. Thymoma.

So, what happens in Thymoma? Not much, one just has to undergo a surgery to remove the Thymus gland which helps relieve symptoms of Myasthenia Gravis in many cases.

Ok, so we let that be. We  shall not think of Moma’s. We shall only concentrate on getting well with medicines.

Precisely, one month post my delivery, I had a brand new prescription in hand that said Myasthenia Gravis.

I was sent home with just a single tablet to be taken thrice a day.

Tensilon.

30th AUGUST 2005

“Ek (One) strip Tensilon, please?”

“Bhaiya, Tensilon hai? “

“Excuse me, I need a strip of Tensilon.”

The same question at atleast 10 different drug stores across South Delhi. At each store we got the same Question as the Answer.

“Tensilon? Sorry madam, is dawai ka to naam bhi nahi sunna hai.”

(“Tensilon? Sorry madam, never even  heard of this medicine”) 

DAY END OF 30th AUGUST 2005

I had no Tensilon. No chemist had heard of it. Or of Myasthenia Gravis.

I called the ever busy, Dr. Suri to get an alternative medicine name. He said look for Myestin.

 

 

1st SEPTEMBER 2005

10 shops or more.

“Ek (One) strip Myestin please?”

“Bhaiya, Myestin hai? “

“Excuse me, I need a strip of Myestin ”

And the same answer.

“Myestin? Sorry madam, is dawai ka to naam bhi nahi sunna hai.”

(“Myestin? Sorry madam, never even  heard of this medicine”) 

Meanwhile, my slur increased.  Was it a natural deterioration because of delayed medication or was it instigated by unnecessary stress and tension of non-availability of the medicine I do not know.

So how does it feel to slur? Mmmm….the tongue feels heavy. Aaa…no, let me put it better. The tongue feels very heavy.

Imagine you are doing a 30 kg pump up at the gym….with your boneless tongue. How would that feel? Yaaa…that is how it felt.

I sat at the dining table for breakfast. Wah! Hot idlis with my favourite coconut chutney. The first bite was awesome. The second bite had my mouth fill up with the soft idli stuck to my gums and teeth. The tongue could not move around to clean the palate or assist in chewing. It just felt lump.

My neck was gyrating like the Indian dancing doll (Press play to see how)

Eyebrows went up and down like a Kathakali dancer. (Do not press play to see how. Its picture. Not a video. Hee hee haw haw) 

And the mouth went left and right –less as a dancer, more like a camel.

I had to raise my head up above the world so high like a crane to swallow the idli. I took a sip of water and it came out right through my nose. Wah…involuntary Jal Neeti!

Rahul freaked.

I trembled.

We finally convinced one shop in Yusuf Sarai to source the wonder drug Myestin from somewhere. Anywhere. We were ready to pay extra for it. Eventually on day 3, Mithilesh, our man Friday managed to get Myestin.

Myestin-60 mg-thrice a day.

Pop Myestin in. All muscles got energized. I would be normal. But only till the next dosage. The slur would slowly come back. Pop another Myestin. And I was sorted.

A few days went past. I got extremely busy.

After all, it was the phase of susu-potty-change of clothes-feed- susu-potty-change of clothes-feed-repeat.

No we still had not named him officially. Unofficially, we called him by many names-kundru, gajar, tamatar, ladoo, poochie baby.

The sultry weather did not help. Nor did the morose clouds.

 

 

Just another night with my son in bed. The best time of the day. When I sang to him a beautiful lori that was part of one of the dance ballets during my performing days. He loved it.

As his eyes sparkled, I crooned breathlessly into his ears…

Chanda sa beta mera raaj karega….(2)

Chanda sa beta mera phoolon sa raja beta…

Chanda sa…..

Before I realised….I had started to sing…

….sandaaa cha betttagaohuitgygjfyfega,nvdu daj.kb,dvjmkpoaslja

Nonsense. Gibberish.

The slur was back with a bang. Despite Myestin.

 

Transmission- phir kharab ho gaya tha.

To be continued…..

 

 

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