Behind the scenes

It can be hard to make your way back to active life after a few years where most non-working hours were spent stuck in bed.

I’m sure many of you have some idea.

It’s hard, but I’m coming back.  Storychick has been up to some stuff – classes and speaking here and there in papercraft and on story.  And more is on the way.  I’ve been working on building some key relationships.  I’m really quite excited.

Throughout the last almost 2 years, one thing I have kept consistent is broadcasting ROC Soup – and now I’ll tackle my archiving backlog – so look for episodes here, on Mixcloud, or the show page at WAYO.  Updating my archives is important for you to catch up and for me to bring in more audio and video to this site.  Expect more on both fronts, including videos of me telling stories and more.

I’ve missed putting the time into writing for Storychick.  Recently, I picked up my pen again – writing in general and for my book projects.  That kicked me back into gear and I have to make sure to keep up every night I can.

The castle shuttered for the winter has been reopened to fresh summer air.  The furniture is uncovered – ghostly once-white sheets sent to the wash.  Cobwebs are being cleared and the sun is shining into the deepest corners.  It’ll be dusty for a day or so, but we are set for the adventures to begin again!

The evening took a sudden turn

Well, it’s happened again.  And, once again, I’ll share my story with you.  You can check out the previous iterations here and here (there was another episode in January 2015 that apparently I did not post about in detail on this site).

First, I have to say that 2016 has been a beast full of personal tests – not the smallest of which is continuing exhaustion and other symptoms related to PVCs.

I’ve had to take a temporary step back from Storychick – and that’s why no posts since February.

But 2016 also is a year of reckoning and not just taking back, but seizing, the reins.  I’ve gone through several second opinions to land with a physician in Boston who actually has seen my condition before.  Hopefully, and with luck, we’ll end this all soon.

Back to the story.

The other night, Joel and I were putting together a rough, late supper.  As I picked up the box of frozen pizza to open it, I felt exhaustion start to pull at my head – much like someone yoinking at a chunk of my hair above my left ear.  I told Joel I’d need to sit. He took over the pizza while I sat on the floor with my back against the gumwood doorframe.

We were talking about some political stuff I had heard on the radio while out running errands and getting the pizza.

My head started to spin, not like being dizzy after dancing in circles, but a deeper, scarier spin that I had felt before.  The last time my  response was “Not good. Not good.”. This time, all I could say to convey to Joel that danger was here, right now, at this moment as we talked politics and prepped frozen pizza, was “Oh, my god.” Three times I said it.

A chrysanthemum firework flashed at the back of my eyelids. An intense metal sound filled my ears.  As if someone was playing a really nasty chord and I was standing in front of a mega-amplifier.

Then I was in a 60’s sitcom kitchen – perfectly perfect in black & white.  The politicians we had been discussing were also there, wearing frilly, flowered half-aprons.

Just as quickly, my eyes opened.  I was now on my back on the kitchen floor – my elbows glued to my sides and my forearms finishing a flail.  I kicked a cat food bowl.  Joel stood over me, phone to ear, asking what had happened.

“How did I get here?” I thought. “Why am I on the kitchen floor? When did Joel get on the phone?  Who is he talking to?  What’s up with the pizza?”

Those first moments are so confusing.  When I passed out in the shower in January, 2015, I had to piece together where I was: “White. … Porcelain. … Bathroom. … Shower.” Much the same this time (realizing it was MY kitchen took a moment).

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This is not my heart, but a bit like what I saw- an example of Toursades de Pointes – the freakout.

 

My heart had gone into freakout mode.  Actually, there was a bad beat, a PVC, followed by a bit of a pause, and then the freakout – 300+ non-productive beats a minute – the EKG read from my defibrillator looks like an angry scribble.  Once again, my bionic device brought me back. Saved me.

My heart tried to freak out a couple more times before I got to the Emergency Room, but each time righted itself before I passed out, before the defibrillator needed to fire.  The thing is, my battery needs replacing, and if it HAD needed to fire again – it might not have been recharged in time.

In a little over a week, I head to Boston to have multiple steps taken – another ablation to reduce or eliminate the bad beats, a new battery, and a new atrial lead – this 2nd line from my defibrillator into my heart might be able to right things in that small pause – before a freakout can occur.

I find myself spending my time trying to be supercognizant of what I’m feeling – wary of any start to the head-spinning that is the first indicator of blood not getting where it should.   And I think about those moments – from that first bit of spinning to opening my eyes confused.  I need people to understand what this is like, to hear this story and try to put themselves in this place.

Heart rhythm disorders aren’t as easy for people to identify with, to understand, as heart disease.  And after trying to find doctors who understood my PVC-triggered Ventricular Fibrillation (and were able to name it), I know how unlikely it will be to find someone in my same shoes. So I share my story.  In hopes that it can help you understand what is happening.  For you to know what it is that scares me and makes me soak in the wonder of life as much as I can.

And I wonder – have others, who have emerged from the edge themselves (even if driven there by different issues), marked these moments?

This “dream state” seemed very related to what had happened immediately before – but the last time I saw flashes of bombs and explosions and doom.  Why THOSE images?  Is that common?

I tried a search at the library.  But “near-death experiences” gives you the stories of those who technically died and came back.  And I’m not sure what to call almost dying, but not quite.

I want to explore this further – to search for such stories.  It’s something just starting, but I’m hoping a collection of these will add great perspective for those who don’t have to go through it themselves.

*I’m posting this now, and plan to tell the story on ROC Soup, in a pre-recorded broadcast for October 1st (10am), while I recover from the Boston procedures. You can listen at WAYO 104.3FM in Rochester, at wayofm.org, or via the Tune In app.*

Do you know anyone who has a story like this, or has been through an experience where they were lost and came back to reality? Please let me know, I’d love to talk to them – you can comment or email.

How are you Leaping?

Inspired by Seth Godin, I am burying my disappointment with February and turning my thoughts to leaping through wonder and the exciting road ahead.

It’s not just Leap Day – an extension to  the brutal month of February.  It’s Leap Year and it can celebrate those great steps towards innovation and new adventures.

The existing power structure wants to maintain the status quo, and is generally opposed to the concept of leaping. In fact, if you want to make change happen, if you want to give others a chance to truly make a difference and to feel alive, it’s essential that you encourage, cajole and otherwise spread the word about what it means to leap.

An opportunity to help the people around you level up. It’s an obligation, an opportunity and a chance that I hope you’ll accept. Tell the others.

Leaping is a part of what we celebrate at Icarus.  Through our repeated efforts at making art, at connecting others, at innovating in the face of today’s challenges, we are crossing the globe – leap after leap, bound after bound.  To find out more about the Icarus Sessions in Rochester, check out our Facebook page – everyone is welcome, anyone can share!

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So, how am I leaping today?  I have some leaps ready – knees bent, butt wiggling like a cat ready to pounce – that I can’t discuss quite yet, but which I think will have awesome impact.  Others?

  • Rochester Stories – the FOOD show – will be April 14th at Writers & Books!  It’s a pot luck event – bring a dish, hear and share stories of food – which so shapes our lives, traditions, and relationships.
  • The story beading class went well and I hope to carry that model forward into other programs.
  • I’m working on more ways to get Storychick out into the community.  If you have a group that would like to get its message heard or learn how to better understand each other through story, let me know – I’d be happy to work something out!
  • ROC Soup radio is rolling forward with great success.  I’m having a blast matching stories and music and sharing time and stories with great guests doing good work.

I’ll be posting more on all of these leaps soon.

Now it’s your turn!  How do you plan to level up?  What innovations, what art, are you making to change your world?  How are you LEAPING?  Comment below!

 

Whirlwind

This past Friday marked one year since my last episode.  One year of battling the unknown issue causing my PVCs (bad beats that are non-productive, causing exhaustion among other symptoms).

The anniversary passed in a whirlwind.  I’d just returned from a trip to Grace Bay in Turks & Caicos.  The return trip was extended and stressful thanks to Winter Storm Jonas.  I ended up with an evening to recoop before the next big adventure.

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Which wasn’t enough.

But Monday am we reported in anyway to Balloon Adventure: Journey on the Genesee.  Our friends at Airigami have once again surpassed themselves.  40,000+ balloons, 75 crew members, and 4 days to produce a 5-story sculpture full of detail, vibrance, and texture. A new theme introduced 3 curious kids who have access to a balloon that lets them explore what they want – and they were exploring the Genesee’s wildlife this year.  Storychick had several roles:

  • Story stations – In relatively quiet space on the 3rd floor, we placed 5 story stations which played fables I’d recorded related to animals in the sculpture.
  • Audio tour – I put together a backstory for the kids and an audio tour, like last year, but with more real-time audio than before.  (You can find it here)
  • Stage performance – This is upcoming!  I’ll be on stage Friday night, right before the start of First Friday, telling stories!  Some old tales, some new, some new twists on ones you thought you knew….

I love working with Kelly & Larry’s designs, then building a story that incorporates great audio clips from throughout the week of the build.  It’s a great story endeavor.

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And there’s more!  I have some other projects starting – more on those soon!  But other things to watch for this week include:

  • Story beads at the Brainery!  Learn to make regular, rolled round & S, and origami water bomb beads – and build your stories into them.  Include parts and pieces, words and symbols, in your beading.  Tell your story to the piece you create and share with the class, if you’re cool with that.  It’s a great way to heal, vent, and commemorate while also getting in the meditative handwork of craft.
  • Saturday on ROC Soup – January was Human Trafficking Awareness month but we didn’t quite get this show together while I was gone.  It’s an important topic, so we’re having a bit of January in February.  My guests will be from the Rochester Regional Coalition Against Human Trafficking – Lauren Van Cott (of Angels of Mercy) and Melanie Blow.

Story is more than meets the eye

The Storychick approach to storytelling is not just about how to spin a yarn – it’s more than writing or telling stories.

It’s about LISTENING.

There’s a magic to it, when you open your ears, heart, and mind.  And an art.

When you are building and strengthening a community, listen to those with stories to tell.  Listen to those whose voices are not often heard.  Listen indiscriminately.  Set bias aside and listen without judgement.

When you are talking to customers, listen to what they need, what they’re struggling with.  Listen to how they approach problems and questions, to the language they use.

In order to share YOUR story – you need to know where your audience is coming from, what moves them, what will resonate with them.  This is learned when you listen.

But wait …. there’s more!

Listening shows that you care.  It builds a bond between you and the teller, you and your audience.  It satisfies, encourages, and thrills your audience before you even start.

As I’ve said before, it’s about getting someone ready to share talking to someone willing to listen.  THAT’S where the magic happens.

 

BTW, this week on ROC Soup, a tale of coyote and badger, the Farmer’s Tavern & Inn, and more.

This week on ROC Soup

Tomorrow on ROC Soup, I’ll be joined by Kelly Cheatle of Airigami.  She designs and builds massive balloon sculptures (including the upcoming Balloon Adventure at the Sibley building)

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and also teeny-tiny crafts – sculpting Oreos, crocheting pigs and teapots smaller than a dime, etc.

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Join us at 10am as she shares stories of her adventures!  You can listen on wayofm.org, via the TuneIn app, or NOW LIVE on 104.3FM!

All shows to date are archived on the ROC Soup site and MixCloud.

Finally, there are 3 DAYS LEFT to the WAYO Kickstarter to cover our operating expenses for 2016.  Even $10 would really help – we’re SOOO close, but need that last bit of help.

 

Stuff gets real in 2016

Not that I haven’t been putting real effort into the work of the past 4 years, but I really believe that this will be the year where some things take off.

2015 in review

Last year saw great strides.  I added my first off-Fringe show, started the radio show, and started doing more targeted projects – from the Balloon Manor audio tour to working with a soup kitchen and a Girl Scout troop.  I built some new relationships and made progress on Noodle (my novel).

It was a rough year medically, so there were good days and bad.  Energy drains sometimes did a number on my focus.  That and the fact that I came seriously close to over-committing.  With a bunch of threads going, I need to keep on track, even when energy gets sapped.  There are things that can go more smoothly and be more productive.

2016 in focus

After thinking about last year and where I want to head, here are my focus words for the year.

  1. Balance – I want to do so much and help so many, but if I let it get out of control, no one will be happy.  I need to balance the amount and type of work that I’m doing.  I also need to make sure that I don’t neglect myself, my family, or my home in the process.  I need to find a workout that will stick, and that I can keep up, and also do more focused meditation, yoga, or something.  Balance will be key.
  2. Expertise – Develop it.  Share it.  Show it.  I know a lot about the power of story and how to use it in many situations.  I need to hone my expertise and be the expert that I am.  Look for that here on the blog, especially.
  3. Target – Focus on those who can benefit from my work.  SELL to them.  Set deadlines and goals and don’t lose sight of them.  Be intentional about networking, social, and do more targeted sharing of my work.

I’m excited about what’s already on tap in 2016:

Merry Christmas, all!

Happy end of year holidays, whatever you celebrate.  And may the spirit of family gatherings, giving of yourself, and indulging in good food be something that you all can experience – whatever your creed or belief, or lack thereof.

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I am tucking into holiday mode – taking advantage of being done with all official jobs by 5pm this evening until Sunday – and I am determined to enjoy every moment.

A few notes:

  • Still looking for an experience to gift the loved one who has just about everything?  There’s still time to sign up for storybead fun on 2/4!
  • As you start to think about goals in the New Year, are you looking to strengthen relationships and build communities?  Consider the Framework Basics package – a great guide to get you started for not so big a price.
  • ROC Soup radio archives are up on the show’s page on the WAYO site!  Catch up on episodes you’ve missed!  Bookmark the page or ROCSoupWAYO on MixCloud for future listening, if Saturdays at 10am doesn’t work for you.
  • This Saturday, my friends Magnus Champlin and Dave Kyle will be joining me on the show for a holiday story swap! Listen at wayofm.org or on TuneIn. (We start broadcasting over the air on 104.3FM in January).