Why I Was Embarrassed About My TEDx Talk And Then Not
The TEDx Talk link was mailed to me. Excitedly I played it. And instantly stopped it. At 35 seconds. I was embarrassed.
What was I mumbling? I could not understand the words. I closed my eyes-took a deep breath. Fast forwarded it to another point, thinking it might get better later. Immediately stopped it. It was as incomprehensible. Suddenly I did not care how I looked on stage, how the gown flowed, if my bulges were visible, if the hair fell in place, the lipstick shade matched or not. All I could focus on was the voice.
The Decision Was Mine
Myasthenia Gravis has left me with a slur that appears in 5 to 10 minutes of constant speaking. I then run out of breath (not steam) and begin to slip into a lisp and a slur. Completely aware of this disability, I still wanted to speak. That was my decision.
For the past 2 years, I have been wanting to finally talk about Myasthenia Gravis to people. I had this terrible urge to spread awareness about this rare autoimmune disorder that might not take your life but mostly screws it up.
I wanted to talk about it in my circle, the extended friends’ circle, office, forums on social media and I wanted to speak at conferences and meets. Post a wonderful opportunity that TIE Delhi-NCR Chapter gave me, where I was on stage with my husband asking questions about my life journey, I gained confidence. You can see that talk here.
Another fireside chat at Instaoffice boosted my morale. Doing a TEDx was surely on my mind.
“As You Seek, So Shall You Recieve”
I got a mail in July this year inviting me to be a TEDx speaker. I smiled. I wished for it and wham I got the invite. Saying no is not me. Instantly a confirmatory mail was sent. With a month in hand, I had more than enough time to think and plan the 18 minutes assigned. If I spoke well, it shall reach out to thousands.
Public speaking, interaction or content have never been an issue with me. Stage fright was unknown to me. In fact, I loved being on stage for Bharatanatyam, plays, and dance dramas. At one time my butter if not bread came from MCing events, small, big and very big. I genuinely enjoyed interacting with strangers from a podium.
Taking this as a perfect opportunity to do what I delight in, I looked forward to the event at TEDx Sarjapura, Bangalore. My talk was timed and well set in my head. The smart ones, the timing of the witty liners would come extempore.
How Can Talking Be Strenuous?
Of course, the thought of a not so clear speech kept coming to mind. However, experience told me- if stressed, it gets highlighted, if at ease it is smooth as cream. With such an advance notice, it had to be the latter. Or so I thought.
The day approached. Since I did not have the confidence to travel alone, Rahul as always held my hand so did our 11-year-old son. Yes, the father made the son bunk school. He believed this experience would be far more beneficial than a mundane English-Hindi-Maths class. I did not argue.
What I did not count for this trip though was all the stuff that goes on a journey. Gearing the mind, packing suitcases, going to the airport, the walk to the airplane, the claustrophobic 2. 5 hours flight, the equally suffocating time in a closed airport, the cab journey to the city that took 2 hours. By the time I reached the hotel, it was time for a rehearsal.
I had not taken into account the amount of walking that would entail. For a person who tires after 250 steps, walking through the humongous ‘Wipro’ campus took its toll. On reaching the venue hall the night prior to the event, I asked the extremely caring and well-mannered volunteers, “Where?” I almost fainted when they pointed upwards towards a staircase the end of which I could not see. “Noooo…”I wailed and continued, “If I walk up the stairs tonight there is no chance of me speaking tomorrow.”
There was a lift. But another furlong away. That was it. I was completely drained.
I have no recollection of when I hit the bed that night. When the alarm clock screamed in the morning, I wanted to smash it. Thankfully, I had my dearest friend whom others know as my sister-in-law, Ruhi who kept pepping me up. She came all the way from Mysore to simply listen to the talk. She ended up looking after me. Darn.
Assigned the first speaker of the day, I wanted it to begin and end fast so I could get back to bed and REST. It is only Myasthenics who would understand what this means. There are good days and there are bad days. This was an especially bad day. That day, which I was looking forward to, was turning out to be a nightmare. I had to sit and do my deep breathing before I took to the stage. I had to relax. Pawan my Yoga teacher’s voice kept ringing in my ears. Inhale deeply. Exhale slowly.
I timed the second dosage of the muscle strength enhancer 15 minutes prior to the talk so that I sail through it. Except, post the talk was when I realized that in the midst of all the action, the Destinon tablet remained in my brown gown’s left pocket.
Finally on stage! I held that which has always been precious to me- the mike. I looked at them whom I loved to interact with- the audience. And began my talk…
“We Are All Miracles Waiting To Happen…”
Two lines down, I heard myself huffing and puffing. The slur kept getting exaggerated. Each sentence I spoke seemed to take a part of my energy and self-confidence. Every word I spoke seemed to weigh a ton on the tongue and lips. For once in my life, I was unable to make out if I managed to capture the audience attention.
I caught some familiar faces in the audience. The ones that kept nodding encouragingly Ruhi, Svetlana, and dear Anjana. They do not know, but I did notice their uncanny expressions. I looked at Rahul and decided to speak to him. Only to him. Concentrate on something that would make me feel at ease. A person who would never be judgemental about me.
Though the slur and the Spanish accent did not lessen, I continued. The stubbornness kicked in. I had to ensure I make the most of this stage and opportunity to reach out to those who live a challenging life with Myasthenia Gravis.
To Prove To Them, That Despite Everything, One Can And Should Do Things They Love And Things They Aspire To Achieve
How else, would this life be any meaningful?
Haha, but that was then, on stage. However, when I eventually received the link, all my big thoughts and discourses came crashing down. I mean, come to think of it, how would this reach a million views if what is spoken is incoherent. I did not have the heart to share it on my FB page initially.
Why this post?
This post I write to tell others and to tell myself:
- Not to be bogged down with disabilities. It took years for me to understand how Myasthenia Gravis can leave a person debilitated. It never crossed my mind that I would be one such MG patient.
- I am more than my slur. To remember and keep telling oneself, that we are much more than our disability. Thanks Amulya for this valuable (pun intended) advice.
- Instead of feeling awkward or embarrassed about a physical issue, embrace it. Make peace with it. Trust me this one shall help us go a long way.
- Never say no to opportunities. You never know what openings it might serve you.
So finally, giving up all inhibitions, I very proudly present my TEDx Talk to you. Rewind-Pause-Replay. But please do listen. Those who manage to understand it all deserve a big hug from us. The Myasthenics.
P.S. Technology is yet to rock. Though there is an enable the ‘Captions’ option to listen and read at the same time to grasp the talk, the transcription is so lousy, it is actually hilarious. Poor auto-translate too got confused!
*Meanwhile, as always a silent prayer to the medical fraternity to find a sure shot cure for this autoimmune disorder called Myasthenia Gravis for all those suffering around the globe.