January 27, 2013: Drumming Up Health...

Custom made congas of the great Jimmy Morales... figured Ali would LOVE them...

Heaveno!

Hope you are all well.

Just spent a busy few days at the NAMM convention (National Association of Music Merchants) in Anaheim, CA.  Unfortunately, I wasn't really in the convention, I was part of a production crew filming  videos for a music learning online platform launching soon.  We were shooting interviews and lessons with premier drummers/percussionists from around the world for a "World Music Rhythms" segment they will have.  It was really inspiring, because the drum is found in every culture, and if you want to connect with anyone anywhere, you don't need to know their verbal language.  They speak rhythm!

Listening to performer after performer come back to the fact that the first rhythm you hear is the sound of your mother's heart beat in the womb was really moving.  It was like these guys and gals were reading off the same script, except they weren't on the set at the same time, they didn't have a script, and it didn't matter where they were from... how their culture viewed rhythm in their culture was as an integral part of life.  We heard this from percussionists from Peru, Iran, Syria, Lakota Tribe, Aztec, Brazil, Ireland, Italy, West Africa, Puerto Rico, and India.  I realized how divorced we are from music making as adults in the United States.  Last year, only about 6% of adults in the U.S. picked up and played a musical instrument.  That made me sad for the other 94%.  There is so much fun and camaraderie in making music - ESPECIALLY just for fun - that it escapes me why we don't do it more as a society.

Active music making lowers stress hormone levels, and actually stimulates immune system functioning.        
We intuitively know that music listening affects our mood positively, but music making affects our body positively.  So, tap clap or snap along with your favorite music, or sing or hum along when listening.  Just the activation of your body to make music triggers physiologic processes in your body that support your health.  Side effects include relaxation, catharsis, joy, social bonding if done with another/others... not bad.

So, sing in your shower, or in your car.  No one can hear you in your car, and no one cares.  Think about it; how many people do YOU watch to see if they're singing while YOU'RE screaming down the highway?  Let it RIP!  You can't get voted off American Idol, 'cuz you're not on it.  Tap on that steering wheel!  Be IN the music, not just a spectator.  You'll feel better, mentally and physically!

P.S.  Next Sunday night I'll be returning from a 2 day training on how to use group drumming with at-risk adolescents to help them cope, connect, and articulate non-verbally what is happening in their world.  It's called HealthRHYTHMS and it is created through a partnership with REMO, the drum company.  So, expect some more highlights next weekend as well.  Another place I really want to target is using group drumming in the workplace to help teams work out their stress and problems non-verbally!  How does the adage go?  We spend more waking hours in the week with those whom we with than with our families?  Having the work team get along makes life better at work, and at home.  If people can beat the stress out through a drum, they are more present when they get home and have that precious little window with their family in the evening.

See you next week!

God night.

January 20, 2013: Back in the Rhythm...

Heaveno!

Alright, back to weekly blogging.

Except, I don't really know what to blog about.  I think being out of practice leaves me out of touch.  Family?  Work?  PUCK?  All of the above?  Life's good around here.  Ali continues to show signs of artistic brilliance.  My goal is to try to make her hand writing an expression of art as well.  My big sister Tracy's handwriting and signature inspired me growing up.  She was an artist and so was I, and I began to look at my signature and my handwriting as expressions of art as much as information.  Ali doesn't quite see the connection yet.  Mainly, she's just bothered by writing and can't wait to be done with it because she enjoys drawing so much more.  And drawing she can do (see above).



I've been reading Julian "Green Eggs and Ham" daily lately.  He has a voracious appetite for books.  Always has, and he is 17 months and he will sit totally calm and focused on that book right now.  It's fascinating how into books he gets.  "Green Eggs and Ham" has really been interesting to read lately.



It is a most wonderful essay on persistence, and overcoming adversity.

Imagine Sam-I-Am as a salesperson, or someone with a vision, or an agent of change.  The comparatively older 'monster' reading the newspaper at the beginning of our story is really playing the role of, the prospect, or 'the status quo.'  Oh, and 'green eggs and ham' can be either any product or service, or change itself.

Through this lens, imagine the whole story as a sales conversation.  The prospect starts out be already declaring that he doesn't like change.  Sam, begins innocently, "Do you like change?"

"NO!" is essentially the direct retaliation from the monster known as Status Quo.

Instead of apologizing, or slinking off, and rather than giving up, Sam, goes for the alternate close, "Would you like them here or there?" However, Status Quo is unfazed.  Not only does he like change in certain areas, he doesn't like it anywhere!

Undeterred, our hero presses on, simply embodying the possibilty that what's missing is the right combination of factors.  Essentially, more effort and information is needed before he can close the sale than he originally thought.  However, Sam carries on, offering no less than 6 more options - each with its own straightforward REBUTTAL by Status Quo.

Finally, Status Quo actually says flat out, "You let me be," which is another way of saying, "Leave it alone, kid."  Thus begins Status Quo's own counter-argument.  He's no longer just saying what he doesn't want, he's now attempting to influence Sam into doing what he wants (which is nothing, of course).

Have you ever wanted to change something, and run into an external (or internal) 'force' telling you to leave it be?  Leave things the way they are?

Our hero tries again, on a train, in the dark, in the rain, all to no avail, and with repeated responses to , "DROP IT!"  (let me be), until the moment of truth...

"You do not like green eggs and ham?"

"I do not like them Sam-I-Am."

Cue the final nail hitting the coffin, right?  Where does Sam go from here?

He goes for the GOAT!  You turn the page, and he's off again, offering solutions, ideas, seemingly more ridiculous than ANY OTHER so far!  and with complete excitement, passion, and presence.  The look on his face on page 43 does not show a HINT of the lengths he's gone through to this moment.  He's like a puppy - always in the present moment - who completely forgets anything that happened 5 minutes ago.

(Lemme tell ya, I only WISH I could master that skill!  I look at Sam on p. 43 and I am totally inspired.)

Sam presses on, and notice he isn't angry, bitter, annoyed... even in the midst of total chaos as they sink under water with EVERYTHING crashing and 'sinking' around them.  He pops back up out of the water on page 53 encouraging Status Quo, "Try them and you may, I say."

(How many of you have said THAT to your kids? LOL.)

FINALLY, on p. 54, Status Quo begins to crack.  He can't take it anymore.  It's just too much.  The persistence is wearing him out.  IF ONLY to SHUT SAM UP, he'll play along, but really, it's just to get Sam off his back.  Sam, all the while, as hopeful and polite... and with his mouth SHUT.

GULP.

TRANSFORMATION.

What I love most about p.59 is Sam's body language and expression.  Status Quo is delighting over this pleasant surprise, and Sam is simply tickled.  He is attentive, like a host or hostess, like a parent, like a teacher.  He is RIGHT THERE in the moment, shining possibility, encouragement, and support.  He is NOT showing any signs of cynicism or annoyance that it took this long.  He's just essentially 'over there' in Status Quo's world. It's like he KNEW all along that this would be the outcome if he just could get Status Quo to try, so there was never a moment of doubt.

Status Quo now sees the light.  He can see all the different applications of this new idea, this new change, and he now begins to enroll himself into the idea.  He is off and running with the idea.  It has taken seed in his mind now.  Sam's work is done here.  He has planted the seed of possibility, and it was FAR from easy.

Here's the best part.

Status Quo at the end THANKS Sam TWICE for something that Sam already knew.  Sam just KNEW if he could get Status Quo to try, that it would work.  He just had to wait around for Status Quo to reach that point on his own.  The process was ugly, filled with chaos, fits, tantrums, collateral damage, and yet all of this is washed away in a moment and image of simplicity when Sam-I-Am and Status Quo stand side by side, no longer facing each other as adversaries, with Status Quo's arm affectionately draped over Sam, Sam smiling humbly yet triumphant.

Do you have a new idea that you just KNOW will make your world better if you could just get it out of your head and planted into someone else's?  Are you willing to take as much abuse as Sam did to see that idea planted?  And when it is, will you forgive the process it took?  AND THEN, will you be willing to get up the next day and start all over again?  These are good questions for January.  They are good questions for ME.  I hope they are good questions for you, too.

God night.

January 13, 2013: Happy Belated New Year!

Heaveno!

I'm BAAACK!

Sorry for disappearing.  Got busy.  Then busier, then burnt out.  Thanks for the words of encouragement from those who commented about my absence.  I really appreciate it.

Life's been good to us.  Holy cow, so much has happened since I last reported to you.

Here are some short summaries:

1.  PUCK had an amazing luncheon in Minnesota in December called Wings of Hope run by the amazing duo of Jen Nick and Christie Zink.  Dr. Tolar, Marc Seymour, and Trisha Knuth were our speakers.  It was an amazing event and one that Ang and I really were bummed we couldn't attend in person, but we had long blown our travel budget with our two trips over the summer.

2.  I gave my first TEDx talk!  TEDx is an independently licensed, organized and produced TED event.  For those who don't know about TED, well, CLICK HERE to get the quick wikipedia blurb on it.  The theme of the event was "The Intersection," so I gave my talk on music therapy being the intersection between art and science.  It was a youth event, so I specifically wanted to "create music therapy" for the next generation in a way that would capture their attention and plant the seed as a possible career for them.  The talk will go live on the internet (hopefully) on February 15.  I'll keep you posted.



3.  We had a wonderful 3 weeks of holiday break for Ali.  I took the first week off and Ang took the next two off and had a staycation.  She spent much of the time with Ali working on craft projects for the back yard, and cooking some wonderful holiday foods (and lots of cookies).  Ali had a "big kid part" in the church Christmas pageant this year.  She was promoted!  We had two great trips to Sea World, and our first trip whale watching!

4.  Julian is 16 months, and just a delight.  He's walking and talking and wearing 24 month clothes and every single day I am completely over the moon smitten over this little guy.  It continues to be such a strange journey without Bella and with Julian.  He's easy-going and easy to care for - by other people's standards... meaning, when others babysit, they just marvel at how much fun he is to be with and how easy a baby he really is.  It's hard to articulate just how much we are aware of that, given what a challenge Bella was because of EB.  Bella was easy, too, but her EB on the other hand, ... not so much.



5.  PUCK finished the year raising $115,000.00 for Dr. Tolar's EB research, and EVERY PENNY was matched by the generous challenge grant issued by EBMRF and JGSF making the total $230,000.00!  Our goal for the year was $100,000.00, so we have beaten our fundraising goals two year's running, and we also experienced 100% growth in our fundraising as we raised $57,000.00 last year.  This means a lot to us, because when we got involved with PUCK, we set a three year plan to grow 100% year over year, and we really didn't have a flying clue how to do it, but we knew enough that "the how" shows up in life when you have a big enough "why," and while I've heard endless cliche's like that over the years, it's really happening.

So, THANK YOU THANK YOU THANK YOU to each and every one of you who has shared our story with a friend or colleague, held a fundraiser, made a pledge or donation, bought my book, etc.  When Bella died, I asked Dr. Tolar what he needed in research funds to make this journey safer, AND what would it take to get him in a position to really step into the future of gene therapy, which most of us believe is the future for a cure to EB, and he quoted $1,050,000.00.

Well, just over 2 years since that conversation was had, and thanks to the combined attention and efforts of ALL the EB charities, DebRA, EBMRF, JGSF, PUCK, and all those who have contributed individually, he's there.  My biggest fear after Bella died was that he would run out of funding and the trial would end and EVERYTHING we and SHE went through would be for naught.  That's why we've been practically obsessed over this fundraising thing since then.  We believe in Dr. Tolar, and we believe his on the right track, and we want to give him every chance to be the guy that finally cracks this code.  I think it is fundamentally healthy to the human soul to be involved in things that are bigger than one's self, and I think this pretty much qualifies as THAT!

Thank you for (still) being here.

God night. 

November 25: Worn and Torn...

Heaveno!

Happy Thanksgiving to you all out there wherever you are!  I know that Thanksgiving is an American Holiday, but aside from the traditional turkey feast, taking a day to give thanks for *Anything* you've been blessed with is a good thing, wouldn't you say?  I am filled with gratitude for so much.  Life is good.  Our family is (I think) two weeks away from FINALLY slowing down.  It's been an epically busy fall for us... far more so than usual, even for us.  Ang has been traveling for work during the weeks, and I've been traveling on weekends going all the way back to August.  It feels like it's been non-stop.  It's not sustainable, but it's produced some amazing results.  You know me well enough by now to know that I'm not a jogger in the game of life, I'm a sprinter, and yes I do need a break, and I've got one coming.

So, what have we been up to since I last wrote you?  I think it's almost been A MONTH since I've posted... which might be a record long absence.  I think we were a week away from our benefit concert when I last wrote.  Well, that went amazing.  We had over 600 people attend and we raised over $7,000 for PUCK, which gets doubled to $14,000.00 thanks again to the EBMRF/JGSF Challenge Matching Grant that runs through the rest of the year.  Those are just the numbers, but let me tell you the stories that make those numbers even more special.

1.  The tickets were $15, and we had just under 500 but tickets.  The rest were guests who donated items to the event or volunteers/bands/stagehands, etc.  Two of the TEN bands on the bill are releasing new records right now, and they are only charging $5 for their CD release concerts.  $5 is the going ticket price, even for the hot bands in town, so to pull that many through the door at $15 a head was really an accomplishment.

2.  While I was backstage, listening to the singers from HEEAAAVVVYYY metal bands say things between songs like... "Epidermolysis Bullosa, EB, Pioneering Unique Cures for Kids, Bella..." with their growly, tough-sounding voices was the coolest experience of worlds colliding I've ever been a part of!

3.  So many people from so many local companies affiliated with live production, bands, tattoo parlors, etc. donated literally tens of thousands of dollars in equipment, raffle gifts, and professional services.  Many of these people have NEVER been involved in a charity event or donated to a non-profit before!

4.  We had a ten-man media team shooting HD video and stills for a DVD that will be released in 2013, and every single person on the team donated their time and talent, and the production manager is producing the video FOR FREE and he is PASSIONATE about selling the DVD and making sure 100% of the funds go straight to PUCK.

5.  This next one is intense, I warn you.  When Bella was cremated, I asked the guy to put a small amount of her ashes in a separate pouch for me. I had this wild idea that I would get her portrait tattooed on my chest, and I'd have the artist mix in her ashes into the ink.  Well, I don't have any tattoos, so as time went on, it just didn't seem like me.  In my old band, I wore liquid latex on my head, torso, and sometimes entire body.  During the course of the shows, as I sweat, the liquid latex would peel off in sheets, looking really gory, which worked really well with the vibe we were creating on stage.   Little did I know that years later, Ang and I would have a baby girl where that very thing happened to her, for real.  So, since this was a benefit concert in memory of Bella, and since I was donning the liquid latex again over my entire body, I decided to add that little pouch of ashes, so that she was a part of my skin that night.  It was a really, REALLY intense process, and I sobbed backstage as we got ready to paint me up.  This was truly an authentic way for me to honor Bella.  Art is taking the joys and sorrows of the world and representing them in some aesthetic way that only you can do.  This was the most intense piece of art I ever created.

6.  During one of our ballads, I created a slide show that told our story from Bella's birth to our journey with PUCK.  It had text and photos throughout it, and I choreographed it with the song. It played on a giant stage scrim above our drummer during the song.  It one point in the song, we hit the emotional climax of the tune, and it coincides with Bella's death.  As the music resumes, I put a few, special pictures of Bella's famous stare.  During one of the pictures, I turned around and looked up at her.  There were were, the two of us, on stage together at one of the heaviest heavy metal shows one could put together,  changing lives.  Angelique worked our PUCK booth at the concert, and even before the song was over, people started flocking to the booth to learn more, tears in their eyes on on their cheeks. Art makes you feel.  As a band, I honor and thank my band for completely supporting my desire to take a live crowd to such a sad place in order for them to feel the reality of this disease.  My band couldn't have been more supportive, and I owe each one of them a giant debt of gratitude for the support and sacrifice that it took to put this concert on.

I am a lucky guy.

Why?

Someone somewhere taught me that no matter what happens to me in my life, I get the last say.

I get to decide what meaning I give to the events unfolding before me.

I get to make art out of life.

I am not special.  Each of us has this ability.  The medium we choose in which to express ourselves is TOTALLY and UTTERLY irrelevant.  What matters is that THE CAPACITY lies within each of us.  We but simply need to remember this, and in the knowing of this one little thing, our lives can be forever transformed...

... by us.

What a gift.

In other PUCK news, we are hosting a brunch THIS SATURDAY, December 1 in Maple Grove!  It is called, WINGS OF HOPE, and will feature 3 amazing speakers, Dr. Tolar, Trisha Knuth, and Marc Seymour!  It is hosted by Christie Zink and Jenn Nick and tickets are only $15!  IF you are interested, there are tickets still available!  CLICK HERE to go to the event page and register!  All the details are on that page regarding location and time.  Sorry I'm just rolling this out now on the blog, I don't always do a good job with running PUCK, but despite me, we're still working hard and making the world a better place for kids with EB.

God night.

Ali as Laguna Blue from Monster High for Halloween and Julian as Yoda...

 

October 30, 2012: Happy EB Awareness Week!

Heaveno!

Holy cow, time just flies faster and faster!  I hope this update finds you all well.  My prayers go out to those of you caught in Sandy's crossfire.  I hope you're okay, your families are okay, and that you have what you need until life returns to normal in the aftermath of one heck of a storm.

SO much to write about.  I apologize for slacking.  The travel schedule has been brutal and non-stop.  I've been driving back and forth to Phoenix to rehearse for this weekend's reunion/benefit concert to wrap up EB Awareness Week.  I can't believe the show's almost here.  I've been rehearsing and preparing for it for FIVE months, and I feel close to ready, but there are some details still getting ironed out, and I am mighty stressed out.

PUCK held EB Awareness Week in style at the University of Minnesota this year!  I am so excited as this is something we had envisioned over a year ago, and finally the timing was right.  We had an EB Awareness booth set up in the student union on campus all week.  Literally hundreds and hundreds of business cards with our website and text to donate campaign were handed out, and countless amazing conversations were had with those who stopped by the booth.  Big thanks to Christie Zink, Jen Nick, Courtney Billing, Kasey Guenther, and the Alpha Gamma Delta sorority for all the hours of preparation and time donated to raise awareness at the U about such great work being done there.  Of the many stories I heard back from the ladies, many of them revolved around this sense of school pride that students felt after learning what meaningful research was being done right there at their own school.

In other PUCK related news, our new Relationship Manager, Christie Zink, has been nominated in a Yahoo "Women Who Shine" competition!  The grand prize is $10,000, and Christie has already promised Dr. Tolar that if she wins, she's donating the money to his research!  PLUS, there is still about $80,000.00 left on the table in the matching grant challenge, so that $10,000 will become $20,000 for EB research...

...if she wins...

Here's where you can help make that happen.

Christie was in the lead for a while, but some others have come on strong over the weekend and knocked her out of first place!  Would you help her regain the lead?  CLICK HERE to vote.  The catch is you have to sign in, but you can use your facebook account or google+ (I think) account to do so - you don't need to fill out a bunch of fields.  I just linked my facebook profile by clicking on that option and it was EASY.  Please take a minute and vote for Christie.  First of all, SHE DESERVES IT.  The woman is a TIRELESS ADVOCATE for EB and isn't even an EB parent, bless her heart.  She routinely manages multiple fundraisers and awareness campaigns on and off line, and just gets it done because it needs to be done.  Even though we've only officially announced her position at PUCK recently, she has been working her tail off all spring and summer on several campaigns and still found time to fly to FLA to take pictures for DebRA at the Patient Care Conference.  Her heart is as big as the state she lives in (MN), and she does all this while raising 3 small kids while her husband travels for work!  (She still won't reveal her secret on how she gets it all done...)

Again, CLICK HERE to vote for Christie, and thank you in advance for this.  Also, please share the link on facebook or your blog or email list, whatever works for you!  Here's the link:

http://yhoo.it/VCymnB

Alright.  Need sleep.  Please say a prayer for those whose lives were turned upside down this week by Sandy.  While I stress out about our concert, I am reminded how lucky we are to be having a concert this weekend in the first place.

God night.