The Story of My Life

Preface

August 23, 2011

“What was that?”  Ethan looked at me, as uncertain as I was.  The room unquestionably had begun to shake, and as I peered through the glass window, it appeared it was impacting the entire office.  That morning, we had been invited to Scholastic’s downtown Manhattan office to be interviewed in an accompanying video(http://video.scholastic.com/services/player/bcpid858992059001?bckey=AQ~~,AAAAAFv844g~,BASb5BU03X-I8zjhaYyMRNzgkSvpc3CO&bctid=1155796655001) for their forthcoming 

scholastic ethan article october 2011Storyworks article called, “The Awesome Powers of Ethan Z,” written by the incredible (“I Survived” series author) Lauren Tarshis.

Rosa, the friendly woman interviewing us, looked at me with serious eyes but quickly followed with an easy-going smile to my nine-year-old.  “Just a minute.  Let’s take a quick break to see what is going on.”   As we waited, I grabbed Ethan’s single right hand finger in my own.  After a few minutes, Rosa returned.  “According to the reports, there has been an earthquake close to the D.C. area.  No extensive damage here in the tri-state area, but I’ll be back in a few to ensure we can continue the interview.”  In truth, I was definitely nervous about the unexpected events, but somewhat  relaxed when I realized that my parents who live in the District were away on vacation that week.   

While hoping there was no real damage where we were, I was a bit relieved for the break (er, the ‘quake) so I could check in with Ethan.   To me, the excitement of being interviewed by Scholastic had overshadowed my desire to actually engage our son about the interview.  From the minute Rosa began to ask Ethan questions, I could immediately tell that his responses were not exactly natural.   “E, everything is going to be fine.  Thankfully all we felt really was a tremor.”  I avoided discussing what might be happening to the South.  “How do you think it’s going?”  With his blue eyes locked directly into my brown, he responded.  “It’s going fine.  I hope I am giving the answers they are looking for, but as we both know, I don’t feel that ‘powerful.’   I  am just a regular kid, like everyone else.”  I had to smile.  “That’s all you need to be.”

 

 

 

ACAMSPHOTO2This past week I was in Florida, speaking at a professional conference I have had the privilege of participating in for years.  As I was gathering my thoughts in anticipation of my two sessions, I received an email that was not unlike others (typically from young adults, in their late teens or early twenties) I have received over the years.  They all go something like this one:

Dear Meg,

I noticed you are a public speaker.  I was born with a physical difference too, and I have come to terms with who I am.  I am writing to you because I aspire to be a motivational speaker.  How do I get started?  I want so badly for people to feel proud of who they are, no matter what they look like.  Because I have become so positive, and have grown to even love my imperfections, I think I can help to inspire others.

 

When I receive these types of emails, several thoughts come to mind.  First, I am incredibly impressed that they have already arrived at a place of unconditional acceptance of self.  That took me more than a decade longer, and as I have written, was unquestionably helped by my giving birth to my difference, twice.  I am also affected by their desire so early on to motivate others.   Admittedly, at their age, I was completely self-absorbed, focused much more on drawing attention away from my physical difference than shining a spotlight.   However, I also just want to encourage these young flaunters to spend their time and efforts finishing school, finding a profession they feel passionate about and navigating their lives much the same way their peers are doing.   In other words, build your own career, one that offers opportunity for public presentation, and learn the skills to communicate clearly and effectively.  If you still want to be an inspirational speaker, you’ll have both the skills and the broader life experience to make an even greater impact.

This matters, to me at least, because I’m concerned about the over-use of the term inspirational.  I believe that when someone who has a physical difference gets up in front of a lot of people and declares how content they are, the public will take one glance and indeed conclude they are “inspirational.”  But have they actually inspired their audience?  Have they reached people who don’t share that physical or other difference?

Just this morning I posted on the DHIFI Facebook page “The Story of My Life” where I talk about finally arriving at a place where I can speak in front of a packed auditorium and simultaneously flaunt my brain and my hands.  Interestingly, one woman wrote, “You inspire so many….you go girl!”  While I loved the comment, in truth my goal is actually not to get up in front of people to inspire.  It is to be engaging, to be accessible, to be approachable, and hopefully interesting.  If that, coupled with my physical difference motivates others (even those without a physical difference) to accept themselves unconditionally, then not only do I think that is fantastic, I actually don’t think I could have reached them genuinely otherwise.  And let’s face it, if all I ever spoke about was how I overcame the challenge of learning how to zip my coat,  while still loving myself unconditionally, I think my message quickly would become quite boring.

charliebaseballpractice March 2014But I also think about this subject a lot in the context of our oldest two children, IMG_5976Ethan and Charlie, who share my genetic condition, ectrodactyly.    We are raising them to live their lives as flaunters, but if you ask them, they certainly don’t feel like anything they do is inspirational.  Ethan loves to play soccer and  basketball.  At eleven he’s also a history and political junkie, and is obsessed with geography and astronomy.  Charlie has proven to us that where there’s a will there’s a way–that he is a talented baseball player, artist, someone with incredible penmanship and an aspiring pianist.   My hope is that for our boys, they are not led to think of themselves as inspirational simply because they are getting through life missing fingers and toes.

And so, for those wanting to know how to become a professional motivational speaker, I must confess I don’t exactly know, since I have never tried it.  Rather, I believe that I simply have been fortunate enough to motivate people who may or may not have a physical difference, but who can still see themselves in my shoes.

 

 

 

 

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