How I, a Myasthenia Gravis patient, coped with public speaking terror

Me speaking at the Stanford Medicine X conference. Photo credit: flickr user stanfordmedx

Ok look, to be honest, I usually do pretty well with public speaking. I have the usual rapid heartbeat and dry mouth, but once I get going I’m not too nervous and people tell me I have a smooth demeanor. But I have a handicap that doesn’t affect most people; I have an autoimmune disease called Myasthenia Gravis that causes muscle weakness. When I talk for awhile, and I mean nonstop talking, the kind of talking you do when you’re presenting to an audience, sometimes my voice just…gives out. It goes nasal; something just kind of collapses, and I’m left stuttering and flailing while the audience has no idea what has just happened. Sometimes this happens after 2 minutes if I’m feeling quite weak, and sometimes I can go on for quite awhile if I’m feeling strong. It gets worse when I’m stressed.

Some of you Myasthenia patients probably understand exactly what this voice collapse is like. My family and friends don’t believe me when I say this happens, because they haven’t seen it – but that’s because I don’t usually lecture my family and friends for many minutes at a time (thankfully).

I recently had the wonderful fortune of being invited to speak at last week’s Medicine X conference at Stanford; according to the site, Medicine X is a ‘catalyst for new ideas about the future of medicine and emerging technologies.’ I was to speak on a panel about self-tracking, and I also was slated to give a 7.5-minute ignite talk about my healthcare timeline visualization project. I was so excited and honored to be included.

I was also terrified.

As the date loomed closer, I had crippling anxiety about the possibility of my voice giving out during my ignite talk. I had nightmares about it. I called my husband in tears.  I didn’t know what I would do if my voice gave out while I was on a fancy stage in front of 300 people.

Fortunately, my fear was productive, because I came up with a few solutions that allowed me to give my talk without any embarrassing episodes:

1. I started early, and practiced often

I literally practiced almost every day for a month. I started putting my slides together at least 6 weeks before the presentation. The practice and muscle memory basically helped me ‘black out’ while I gave my talk – I hardly remembered it after the fact.

2. I recorded voice-over narration, giving my voice a break at key moments

Just like Milli Vanilli recorded their voices and played them back while they performed on stage, I recorded 4 slides (at 15 seconds each) and had my virtual, recorded self take over for my real stage self at a few key moments. I knew my voice would be getting very tired at 5 minutes, so I gave myself a 30-second break at 4 minutes, and another break around 5:30. This let me grab a sip of water and recover, and the people in the back didn’t even realize that I had stopped talking! This was really revolutionary for me. It worked, the transitions were relatively smooth, and just knowing I had this backup rest time significantly reduced my anxiety.

3. I used visualization to reorient my feelings about presenting

I imagined how I wanted to feel as I was talking and what feelings I wanted to project to the audience. I wanted to appear composed, animated, and articulate, and I wanted to project an aura of caring, love, and openness. I wanted to share my story from the heart. I thought about what this looked like, and I drew a rudimentary sketch with my beloved colored pencils. Here it is! Do you like my crazy eyes?

This calmed me down every time I thought about it or looked at it.

Once I re-framed my presentation from an experience of anxiety to one of sharing my story in an attempt to share knowledge, help patients, and do my best to help make the healthcare system better, I felt a deep calmness. I imagined a bright light beaming out of my heart, projecting compassion and understanding toward my audience (which included lots of e-patients, doctors, and others who are poised to transform healthcare).

Yes, I read two Deepak Chopra books in the weeks leading up to this talk. I was just in that frame of mind. And it worked! One of my healthcare heros, Susannah Fox, said via twitter: “Your warmth & insight come thru online but are nearly blinding in person :)”  I credit this visualization exercise with helping me project my authentic self.

Creatively solving life and healthcare challenges

I learned from this experience that if I am willing to apply the same creativity and effort to solving my own problems that I regularly apply in my work as a User Experience Designer, I can revolutionize my life. Once I approached this challenge with an open mind and escaped from my fear vortex, the solution became starkly clear.

At the conference we talked about asking ‘How Might We…?’ questions to imagine new solutions to tired old healthcare problems. I think this can work on a large scale (‘How might we grant patients access to all of their health records?’) and on a smaller, more personal scale (‘How might I wean myself off this drug that doctors say I will have to take forever?’ or in my case, ‘How might I elegantly deal with my voice giving out onstage?’).

How about you? How can you creatively solve the challenges that rise up in front of you?

If you’re interested in seeing my talk, go here and pull the slider to the 7:08:00 mark. 

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