826Valencia, Dave Eggers, Don Teague, Friedreich's Ataxia, klepto-collaborative poetry, Kyle Bryant, Leary Firefighters Foundation, Michael J Fox Foundation, Milly Kondracke, Mort Kondracke, MS, MS150, NYC Marathon, Once Upon A School, Parkinson's, poetry, Ride Ataxia (Dallas), TED, TEDActive Palm Springs, TEDx, WordPlay
I was interviewed a few weeks ago by a journalist doing a series of interviews on people overcoming adversity. The interviewer, Don Teague, is a filmmaker and author in addition to being an Emmy Award winning journalist and the anchor for Houston’s FOX news. I’m sure he’s an easy guy to talk to regardless, but given that we’re both writers and lovers of a good story whatever the medium might be, I especially enjoyed our conversations.
We talked mostly about what has made a difference in my life with MS. Which is to say that a lot of what we discussed is what I have explored and continue to explore here in this blog. Some of my “exploring” goes on over at my other blog, WordPlay, as well. WordPlay started out when I created a poetry in the schools project in response to Dave Eggers’ TED Prize wish. My mobility assistance dog Luke is my “co-teacher” in the poetry classroom, and quite the furry muse as it turns out.
I was awarded a TED Prize Challenge Award for WordPlay and received a scholarship to TEDActive in 2009, which was a life-changing experience. Since my husband and I moved back to our hometown of Houston, TX, away from Southeast Florida where WordPlay was based, that blog has turned into a place for me to discuss my more wordy and poetic endeavors. Many of those, not coincindentally, are TED and TEDx related. I’ve even invented a new form of poetry, and nobody’s more surprised about that than me, I can assure you. In April I begin teaching poetry again and I couldn’t be more thrilled about that; I’m partnering up with a Houston-based nonprofit C2 Creative to teach writing workshops for kids, teens and adults.
The last time I was interviewed about my life as it’s affected by MS was on The Oprah Winfrey Show in 2002, almost exactly a decade ago. Oprah put a call out to her viewers asking who our heroes were and how they had inspired us. I’ve told the story in greater detail here on this blog before, but the short version is this: I wrote in to say that Michael J. Fox was my hero and my role model because he took a life intersected with illness and made of that unexpected life-changing factor an opportunity. The way he handled a diagnosis of Parkinson’s completely altered the way I viewed my own diagnosis of multiple sclerosis. He was not focusing on what he could not do or would someday no longer be able to do, he was purposefully engaged in all that he might effect change for – in the present moment, as well as in the near and long-ahead future. Bearing witness to that entirely reoriented my own thoughts and emotions regarding my life with MS.
It’s interesting, the things and people and events we look back on as remarkable for the way they changed us and allowed us to enact change: heroes, role models, inspiration. I was explaining to someone just the other day that while all that is wonderful, heroes and inspiration only serve as sparks. We have to fan the flames, to follow up that inspiration with action. I came upon this realization while sitting on my couch in Hollywood, Florida back in 2002 watching the rerun of the Oprah show where I talked about Michael J. Fox being my hero. It was surreal; a meta kind of ah-ha moment. There I was on my own TV screen watching my hero hug me in front of millions of viewers, and a little voice inside me asked “So, you were inspired by your hero and you changed the way you thought about yourself with the diagnosis of MS on board for the long-haul of your life – but, AHEM! – what have you done about it? What’s changed? What action have you taken that capitalizes on this new-and-improved way of seeing yourself?”
The truth is that I’d stopped at the ah-ha part. I had been inspired to a different, liberating and empowering way of envisioning myself and my life, but I’d gotten stuck after that. Right smack in the middle of the feeling different, which did feel better, for awhile. But that feeling doesn’t last if you fail to follow up with taking action and making changes in order to actually become different. Which is when I got up off the couch and set about a way to finish my undergrad degree, not as an actor – a theatre major – but with a general liberal arts degree that allowed me to combine my performance background and experience with another form of narrative – the on-the-page kind of storytelling. And from there I applied to graduate creative writing programs and eventually got accepted to my top-pick. With a full-ride scholarship and a teaching fellowship. And then one day I saw Dave Eggers’ TED Prize wish and some new, well-timed inspiration washed into my life. And with the Michael J. Fox + Oprah Show experience under my belt, I was a little faster with my response time, a bit sharper with my thinking-moving-into-doing and WordPlay was born.
So when people ask me now what my “secret” is, how I manage to be positive and do all that I do in spite of all that comes along with MS, the answer is that there’s not really a secret at all. I think it’s always been around and been available and been as true as truth can get: if you want your life to be different, to be better – you have to do different, you have to get up off your duff and make it better.
On The Oprah Show that day back in 2002, Michael J. Fox spoke of his hero, Milly Kondracke. Mike was inspired by Milly. He capitalized on that inspiration; he took action; he made drastic changes. I’m not saying Milly was his only inspiration or that it was in any way easy to effect the changes he did, but the point is that he made the connection from thinking and feeling differently (inspiration) to doing differently (action), which allowed him to be different (transformation). Witnessing that difference in him inspired me, and then I finally clued in and followed up that inspiration with changes as well. So if I know a secret or have any superpowers, you might say I
stole borrowed them from pretty-spiffy folks whose superpowered ways I admired and aspired to emulate.
It all boils down to this: Think Differently + Do Differently = Become Different.
I know this “formula” to be true. I know that it works; I’ve put it to the test over and over again. I was profoundly inspired yet another time – just a couple of years ago, in fact – when I learned about a guy named Kyle Bryant who has Friedreich’s Ataxia. He rode a recumbent trike cross-country to raise funds and awareness for a cure for this debilitating, fatal disease. Not only did he inspire me to find a way to ride again after I thought MS had taken cycling out of the picture of my life forever, he led me to go on and put my pedaling to good use in the spirit of his example.
First as a member of Team Leary Firefighters Foundation in the NYC Marathon, and now for Kyle’s own foundation which will be my first attempt at a ride of this length, almost as long as two marathons! (You can support my ride with a donation to Kyle’s foundation, Ride Ataxia HERE)
The interview with Don Teague will air tomorrow – Wednesday the 6th – at 5 & 9PM Central Time. To be honest with you, I don’t think I did a very good job attempting to be eloquent about all of this stuff when the camera was rolling – which is to say, when it really counted. What I loved about acting on the stage was being able to slip inside the skin of someone else’s life. I was really good at that. To an extent I do the same thing when I write, whether the form is poetry, fiction or nonfiction, because I can basically morph into someone else. Even when I’m writing the truth, as me, with my own voice, the text on the page or screen provides a “distance” that enables me to feel safe, which gives me permission to be even more forthcoming than I usually have the courage to be in person. In essence I’m writing through the character of myself, if that makes sense, using pages – whether they be paper or web-based – as the costume that shields my vulnerability. But when being interviewed on The Oprah Winfrey Show or even in my own living room, there’s not a way to mitigate that lights-on camera-pointed-at-me can’t-escape feeling that scatters my thoughts and twists my tongue.
That’s why I wanted to write this post. To attempt to better explain what I know I did not say very well during the interview. I’m hoping that some magic will happen in the editing room and I won’t come across as a complete idiot. Not because of my pride (okay, okay, maybe a little!) but because I do very much want people to be able to take the inspiration gathered from their own heroes and run with it – all the way to the Finish Line of the fabulously-different lives they’re dreaming of. I want you all to know that if Michael J. Fox and Dave Eggers and Kyle Bryant can take action to change the world – little or big pieces of it – then so can we all.
I know you can do it because I did it. I made history by being the first person to use a foot-powered trike as reasonable accommodation for a disability in the NYC Marathon and raised a few thousand dollars for firefighters along the way.
I created a poetry in the schools project that brought words and imagination and adventure to the lives of kids in seven classes at three schools for a year; those students were brave and honest and creative and collaborative; I know, without a doubt, that I made a difference. And they certainly made a difference in my life.
I’ll ride on March 24th with Kyle Bryant, challenging myself to ride twice as far as I’ve ever ridden. And then in late April, I’m going to tackle something even more far-flung and perhaps far-fetched: my very first MS 150. Yeah, that’s right, almost triple the miles of a marathon, two days in a row.
I have other non-triking-related big dreams: I want to act again (I miss the theatre more, not less, with each passing year), I hope to be invited to give a TED Talk someday (a way to give back some of the inspiration that TED Talks have given me); I aim to resurrect the magic of WordPlay and create an 826Houston a la 826Valencia, a place of literacy and tutoring and artful endeavors of every imaginable shape and stripe; I’d love to finish these three books I’m working on!
All of this isn’t to say, Hey, I’m so cool, look at me! It’s to say, Look, I’ve done some things I thought I couldn’t do and you probably can as well. It’s to say, I’m shooting for my version of the stars – I may not succeed, but I’m sure as heck gonna go for it. And also to say, Hey, take a chance, come and join me in the dreaming and doing. The real secret is that if you want superpowers you have to grow them yourself, which is by no means easy but is absolutely possible.
If I do sound like a goofball tomorrow, that’s okay. You can rest assured that I’m a ding-dong who’s very happy with my life. Who has MS and some other “handicaps” as well but remains determined to origami those challenges into opportunities any way I can finagle. Who believes that the greatest hardships in life are often the exact opposite of a Pandora’s Box, which is to say that those obstacles – in my experience, anyway – hold the seeds of my deepest joys, the starting lines of my most memorable journeys, and have provided the source of a
secret superpowered formula for dreaming and doing that has never let me down. Who has been blessed with inspiration from some remarkable folks (some famous, some not) and has a phenomenal support system of superpowered friends, service dog, and an incomparable husband, life partner and hero-in-his-own-right, Gary.