On speaking up

I stood in the wings, wearing jeans and my Regina Holliday Walking Gallery jacket, ready to take the stage in front of over 500 people. My heart did three double flips in my chest and I tried to take a few deep breaths. ‘Failure is not an option,’ I repeated in my mind. The speaker in front of me finished, and I stepped out and grabbed the microphone from her hand. I held it up to my mouth and started to try to tell a dumb joke, and then realized the crowd was still clapping and cheering so no one could hear me. They stopped. I paused. I looked back at the screen, and my mind went completely blank.

‘Hi,’ I said.

Then I launched into my presentation, ‘Help me visualize my damn data,’ at the eyeo data visualization/creative coding festival in Minneapolis. It was an ignite-style talk, meaning I had 5 minutes to talk and my slides would auto-forward every 15 seconds. It was organized by Brady Forrest, who wore a sassy pocket kerchief; he is the guy who invented ignite talks and made them cool.

There was kind of a lot riding on my presentation. I spoke to a crowd that included the best data visualization experts, the most creative coders, heroes and pioneers and the folks who love them. The audience seemed to be, at first glance, a sea of young white men with trimmed beards, black hoodies and fashionable glasses, with a few tattooed, cyber punk ladies interspersed. I spoke on the first night of the conference, meaning if I messed up, people would be giving me sidelong pitying looks for the rest of the week.

I tried to put all of that out of my mind. My biggest worry, as always, was that my voice would give out from Myasthenia Gravis weakness. My voice strength can fluctuate by the hour, or even by the minute, so I can never be completely sure how I’ll do. Fortunately, I had pre-recorded two slides just over halfway through my talk, so I could give my voice a rest.

I went into ‘speech blackout’ mode and recited my talk out of pure muscle memory. I talked about my medical timeline, about the other patients I’ve found who are visualizing their data, about my work with Medical Avatar, and about some key opportunities for data visualization in healthcare. The last few words were difficult to get out, because my voice had in fact just about collapsed. But I said it…’I hope you’ll consider helping patients like me visualize…our…damn data.’ The crowd cheered, I stepped down, and collapsed into my seat. Whew.

After the talk, people poured into the gallery, and that’s where it began.

mist

Someone would materialize out of the crowd and stand nearby. Look at me, look away. Take a breath, let it out. Then come haltingly into my immediate radius and shake my hand and say I really liked your talk. Then they would lean in a little bit, lower their voices, and tell me secrets.

I also have…

My wife has…her doctor asks her to keep a journal but…

My daughter…I wish I could do something to help her…

I’ve thought of doing something like you’ve done…

The pain was so strong I had to quit school….

No one knew what it was…

I can’t figure out what’s causing it…

My husband has tried everything…

They murmured their fears and frustrations, and we together we spoke a language that many of the healthy people at the conference wouldn’t really comprehend. No matter how short the exchange, their stories became lodged a little bit in that place in my chest where I collect them. I imagine the patient stories living in that place, swirling and tumbling and wrapping around one another.

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Even if I never really got their name, my heart and their heart became connected by a thin, gauzy strand. I collected these silken heart strands over the course of the conference. The strands are invisible, but here I will color them red since our hearts flow through them.

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Something is happening with our heart connections. We are creating a network, not only of empathy and support, kindness and pain, but also of bravery.

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One person’s audacity ripples through the network and helps others comprehend what they are capable of. Each person radiates and vibrates with strength, and our auras link and intertwine until they become a weblike scaffolding, a densely-knit layer, that holds us together and keeps us upright.

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I wouldn’t have had the honor of making these heart connections and holding these stories in my chest if I hadn’t spoken up.

update: here is the video:

Eyeo2013 Ignite #4 – Katie McCurdy from Eyeo Festival on Vimeo.

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25 thoughts on “On speaking up

  1. Oh Katie, your words are strong, brave and filled with courage.
    Your words touch my heart! Keep that heart filled network growing.
    Bobbi

  2. Katie, you are an amazing woman and a beautiful, talented writer and artist. Just look at what you have accomplished. You have opened up a whole new world to these people with your history, research, awareness and given them hope. You are the best!! I place you on a pedestal and admire you for your public speaking. I envy your bravery. Love, Anita

  3. Katie, wow, that was so real! In a culture where it is often so important to project an image of strength, you remind us that we are stronger when we make personal comnections that acknowledge weakness. Very well done.

  4. Such evocative and inspiring imagery! The sequence evokes a process of growing wings … and soaring rather than sore-ing amid pain, fear and doubt.

    I can’t remember if I’ve mentioned this [here] before, but I’m reminded of the personal philosophy of psychologist Carl Rogers, especially his observation that what is most personal is most general:

    There have been times when in talking with students or staff, or in my writing, I have expressed myself in ways so personal that I have felt I was expressing an attitude which it was probable no one else could understand, because it was so uniquely my own…. In these instances I have almost invariably found that the very feeling which has seemed to me most private, most personal, and hence most incomprehensible by others, has turned out to be an expression for which there is a resonance in many other people.

    Thanks for offering yet another opportunity for those who feel isolated to find resonance!

  5. Beautiful imagery from a beautiful person. Your attitude is amazing…..thanks for sharing such a powerful experience.

  6. WOW!!!! You are such a wordsmith. To add the beautiful illustrations made your blog come alive for me because I am so much more of a visual learner. Thanks for the education and opportunity to see you grow in your personal and professional life

  7. I’ve got a t-shirt that says, “God never wastes a hurt….ask me how I know!” He has pulled together all that you are — VERY creative, intelligent, truthful, humble, emotional, and transparent—mixed it with a disease called myasthenia gravis, and put you in a position to help SO many people by sharing your story. I applaud your courage and, as a daughter of a Dad who struggled with myasthenia for 30 years, I thank you for reaching out to others so they know that they aren’t alone!

  8. in a world of dandelions you a a rare orchid. i am always so proud of you and love you very much. as we expose our weaknesses we are stronger. nothing to hide is pure truth. love, don samardich

  9. Pingback: Ode to Stanford Medicine X e-Patients | [sensical]

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