Thursday, June 5, 2014

Goodbye Yellow Brick Road...

"It's a fragile thing, This life we lead,
If I think too much I can get overwhelmed by the grace by which we live our lives with death over our shoulders" - Eddie Vedder "Sirens"

"I never thought it would get to this point", Ron said as we hugged in the reception line after Amanda's service.  I nodded my head in a vain effort to acknowledge the pain and loss.  I didn't have the words.  Almost 9 months to the day had passed since we gathered in the park to take photos.  Amanda's quarterly scans a week prior found a spot on her tibia, a relapse of the neuroblastoma that was in remission for two years.  When I first heard the news from Michelle I experienced the same sense of vertigo I felt 22 years ago.  Diagnosis. Treatment/surgery. Remission. Relapse. Experimental treatment. Devastation.  My mother lost her battle with cancer at the age of 43.  As with Amanda, it was much too soon.

When I received the phone call from Michelle to do the photos I immediately felt a weight I haven't felt before when shooting.  I'm typically a bit nervous and anxious prior to taking photos because in my mind I'm convinced nothing will work and I'll disappoint those involved.  This was different, though.  I understood what the stakes were and the whole experience took on a completely different level of importance.

I've often pondered the importance of taking photos and I've run through the gamut of what it means to take "important" or "significant" or "artistic" shots and I've never come to any sort of conclusion about the end result and what makes it worthwhile.  In the end I suppose my only criteria is that I hope to strip away all of the pretense and capture the essence of the person and/or the moment.  The camera is simply a passport, an invitation into the most intimate moments in a person's life.  If you allow it to happen, it's a way to tell a person's story.

I didn't know much of Amanda's story prior to that day last September.  I knew about it peripherally because Nikki and Michelle were in the same book club for a time, but I had never spent any time with her.  In short, her clinical story goes like this:  She was originally diagnosed at 16 months and underwent surgery and chemotherapy, was in remission for about 2 years and then relapsed in August of 2013, and succumbed to the disease in May 2014.  However, no clinical summary can encapsulate any of us, and it certainly didn't encapsulate Amanda.

As I sat through her beautiful service a picture of the real person emerged and I learned so many things about this sweet spirit.  She loved animals, she loved to dance, she loved to play, she called Ron her hero, and she loved Elton John.  I heard many stories about these and other things, and I heard a lot of stories about her strength.

Three of her caregivers (therapists) got up to speak and related stories of her strength and her spirit and how she pushed forward despite the pain she surely must have felt day in and day out.  Due to the disease, she was developmentally delayed and she often communicated via sign language and gestures.  When she accepted a caregiver as worthy, she grabbed their hands and pulled them to her heart, or wrapped them around herself, signaling she wanted a hug. I received similar acceptance the day we took photos.

In the photo at the top of the page, Amanda gave me true photographic access, the kind all photographers strive for during the process.   Prior to this shot she smiled and did her best to be interested, but that was mainly because her parents were involved and giving her guidance.  She could see the nearby playground and naturally that was what she focused on.  Upon seeing this, I recommended we go spend some time there to let her play.  After 20 or so minutes at the playground we moved over to the grass and without prompting, she sat down in the pose you see.  There's no way I could have posed her better, nor could I have coaxed a better gesture out of her.  I like to think she was thanking me (and us) for going to the playground, but who knows.  Once thing is certain, though, the pose was her choice.  She let me in.

In addition to being verbally delayed, the disease made learning to walk a big challenge as well.  The therapists related stories of her determination to walk, spurred on by the reward of toys and the desire to walk down the hall where the other kids were playing.   On the day we took photos I could see it wasn't easy for her to walk, but she was determined to do it, especially with her parents holding her hand.

Ron and Michelle held her hand literally and metaphorically through the entire process of her treatment.  Their background in biology made a huge impact in providing input and feedback to her doctors and making sure she had the best treatment available.  I was awed by their strength as they each stood up at the memorial service and told all of us what Amanda meant to them.  They were eloquent, funny, touching, and strong.  They talked about her personal quirks and they talked about her treatment and how they plan to raise funds for neuroblastoma research moving forward.  In doing so, they plan on continuing to tell her story in the hopes it will help others.

In the end, I suppose that's what I try to do with the camera.  I try to tell other people's stories and I hope to gain insight in the process.  Although I'm overwhelmed with a tremendous amount of sadness at her passing, I'm also honored to have been just a small part of her story.  She'll never know it, but she taught me some things, she gave me insights I wouldn't have had before, and she gave me clear focus as to what matters.  As I continue to walk along in this fragile existence, I'll take those things with me and I'll tell her story to anybody who will listen.

A fund has been set up in Amanda's name at the St. Baldrick's foundation for Pediatric Cancer Research.

Monday, June 2, 2014

Wonder Why You Ever Go Home

This is how I remember Colorado.  Mostly plains, with mountains in the background.

Years grow shorter, not longer, the more you've been on your own. 
Feelings for movin' grow stronger, so you wonder why you ever go home.....

Jimmy Buffett, "Wonder Why You Ever Go Home"

I must have listened to the album A-1A at least 25 times while we were in Colorado last week.  Jimmy Buffet is as entrenched in my DNA as my hazel eyes.  I'm talking about the early stuff, before every fraternity and hipster started blasting it once June rolled around and before the term "Parrot Head" was coined.  Despite the music's tropical overtones, I most closely associate Buffet's music with Colorado where I spent my formative years watching my dad as an entertainer and hearing these songs on a nearly endless loop.  The lyrics are permanently burned into the deepest recesses of my brain, yet the meaning of those lyrics has changed over time.  As I've progressed into my 40's, I've gained a  different perspective and I see things in a different way and the songs have taken on a whole new life for me.  The years are shorter, I feel restless, I feel conflicted.  I feel torn between California and Colorado.  I left Colorado many years ago and I've run from it ever since.  Maybe it's the pain of my mother's death.  Maybe I've changed because I've seen a different lifestyle.  Maybe I know I can never replicate those idyllic childhood days and relationships because everybody moves on with their lives. Maybe it's all of those. What is home and why, then, do I ever go home?

The obvious answer is to watch my nephew, Jacob, graduate from the Air Force Academy Preparatory School.  We've followed the same road in that regard.  I was in the same position 23 years ago when I graduated with the class of 1991.  What a different thing it is to have everything in front of you versus knowing pretty well what you're going to be.  Youthful Optimism vs. Practical Wisdom.  It's hard to say which is better.  I can't give a definitive answer, I'm still somewhere in the middle.  It seems to be a sliding scale with optimism on the far left.

As I watched Jacob with his closest friends I saw the bonds that will exist for the rest of their lives, forged in only 9 short months.  Those nine months are a virtual rebirth, only this time going from a 17 year old child to manhood.   Milestones are good, they give us a sense of place and time and he and I share this same milestone.  Being there felt vaguely like being home, but viewed through a peephole in the wall.  I felt like I was spying on my own life through a time vacuum.  It was desperately close and familiar, yet I remained firmly an outsider with restricted access, limited by a distinct barrier.  Time.

We're all fighting time.  Some want it to pass quickly and others desperately want it to go backwards.  It's a fruitless battle and so we try to make the most of what we have.  I saw this fight in it's various forms with the friends and family we visited.  Some have time on their side and some don't.  We saw Nikki's cousin, Jude, turn 1.  He's got a lot of time on his side, he's sitting as far left side of the scale.  I got to play tennis with Jim, the guy who started me playing some 35 years ago.  At age 75, time isn't on his side.  He's on the far right side of the scale.  He has a ton of wisdom.  Although he's not pessimistic, he has a distinct sense of where he is. We sat and talked for several hours and I could hear it in the things he said and the stories he told.  In those couple of hours I was 12 again. In his voice I could hear the Boston accent, which I don't remember him having when I was a kid.  Of course it was there, though.  Maybe I just didn't care.  Then I had an epiphany:  I'm absolutely drawn to Boston sports and hockey in general.  This is the guy that first introduced me to hockey and took me to a Colorado Rockies vs. Detroit Red Wings game (or was it the hobo Brad Langdon that took me to the game (*1)? ) Either way, I still carry with me the tennis and hockey legacy .  He's retired now.  He paints a lot and he's always learning, always pushing the slider to the right.   I do a quick inventory to figure out where my slider is. I think I'm at that optimal point where optimism and wisdom meet in the middle.  I don't have the youthful optimism of a 17 year old, I don't believe "anything is possible".  Some doors have been shut (professional athlete), but there are still things to look forward to and now I have the means and the wherewithal to make it happen.  Plus, I can still maneuver around on the court.  Time hasn't closed that door just yet.

Jude has time on his side

Jim in front of some of his paintings
Time may have closed the door on Dave's dream of becoming a legend, though.  Prior to the trip I checked his website for his performance venues and dates and I came across this passage from his newsletter soon after his 58th birthday:

".....the last few years I have had to come to terms with the reality that, at this time of my life, the days ahead of me are far fewer than the days behind me. I fight myself every day with that thought -- I have dreams and aspirations I've had since I was 5 or 6 years of age that I've molded myself for and prepared myself for my whole life that have never come to fruition -- and I have to accept that they may in fact not ever. Painful Facts ---- I will never play guitar for DEEP PURPLE, I will never have ERIC CLAPTON on my speed dial, I will never be asked to back up JOHNNY WINTER or RICK DERRINGER, or ever have GREG ALLMAN over to the house for dinner when he comes to town....

Similar to Jimmy Buffett's music, Dave's playing is as familiar as anything I know.  He played with my dad in bands at various times and I've probably seen him play live at least 100 times.  He's as good as any guitar player I've ever seen live, but the music industry is a cruel bitch.  Talent isn't enough. Often times there are so many other factors in play, things that may or may not have been in Dave's control.  He keeps playing, though because not playing isn't an option.  The notes, chords, riffs, and melodies flow out of his gigantic fingers in a tireless string of beauty.  After one impressive riff, my dad (who has played guitar for over 40 years) leaned over to me and said, "Did you see how his fingers moved on that?  You're just as close to being able to do that as I am".   As I sat there and pondered his immense talent on this tiny, inconsequential stage, I realized Dave's perseverance is a lesson to me.  It's alright to not make money or become famous in the pursuit of your passion.  The passion to continuously improve is a worthwhile pursuit.  Push the slider to the right.

Dave Frisk and his guitar

My dad, Dave, and I

After experiencing the first time warp while watching Jacob graduate, I didn't expect to find myself in another one the rest of the trip.  It happened, though.  Sharon Lloyd, an old family friend I haven't seen since at least 1978 also came to watch Dave play that night.  She pulled a small card out of her wallet and handed it to me.

"It's the card from the wedding gift your family gave me at my wedding", she said. "I still have those knives, they're very special to me".    I broke down immediately when I looked at it.

Seeing my mom's handwriting is always difficult.  I see it from time to time on old boxed up letters, cards, and mementos.  Because I have to actively access these boxes, I usually have control over when I'll see her handwriting.  This small relic was completely unexpected, though, and the tears were immediate.  For a brief, elusive moment, she was alive again, revived in my mind by one small sentence and a signature.  The mind can do incredible things and in that small moment of time I relived much of my childhood.  It must be the same sensation people talk about when the say "my life flashed before my eyes".

I've been reflecting on the entire experience since I've been back and trying to process what it means and put it in perspective.  Why do I go home? It's not the obligation of attending a service or to fulfill family expectations.  It's much more than that.  I go back because it allows me to reconnect with my younger self and remember the person I was.  The people I visit allow me to take a look back and see my progression along the sliding scale from a young kid to an adult and re-experience things I didn't remember existed.  I go back because I'm getting to know myself again.  It allows me to break small chunks out of the wall I established in February of 1992 and take a peep back at the softer, gentler kid.  Sometimes I feel like I'm the salmon out at sea, lured back to my origins by some unknowable force inside me that I can't control.   My spawning ground is Colorado.  It's part of my DNA.  That's why I go home.

*1 Brad Langdon is a guy my dad picked up hitchhiking and brought home to live with us for 6 months.  By definition, he was a hobo (a word that needs to be used more often).  Times were different then, I suppose, but I would love to look through that peephole in the fence and watch my mom's reaction when the old man brought home a hobo.