last sunday morning i got a phone call from sebastian. i hadn’t seen him in almost eight years, i think, but we were facebook friends. he said apologetically, “my wife said i was crazy to call someone at 9:30 in the morning on a sunday, but i thought it’d be all right.” it was fine. it was, in fact, great to hear from him.

i first met sebastian in 1999, through camp del corazon, where he was a counselor and supporter. sebastian has a pacemaker and a defibrillator, and because of that the kids at the camp called him “zap man”. the last time i talked to him he had been a personal trainer, which – what with all the hardware he was sporting – was amazing. sebastian once told me a story about working out at the gym too soon after surgery and busting a wire right through his skin. i’d like to say that’s the only thing that kept me away from the gym, but really, it’s just my own laziness.

in the time since we last spoke he had changed careers, started working for the american heart association as a youth outreach coordinator, gotten married, had kids, moved to texas and then back to los angeles (not necessarily all in that order). he said that he had been in congestive heart failure and that he was going to need to get a mechanical heart valve put in. he asked if i would be interested in documenting his recovery.

i wasn’t able to be there for the day of the actual surgery as assignments had been keeping me busy last week, but i found time to visit with him yesterday, four days after the operation. he was walking around, moving better than i had any right to expect. he claimed the percocet helped, but don’t let that fool you. sebastian is as tough as he is kind, calm and open. he seemed to be dealing with the hospital very well, though when i arrived the TV remote control was broken and he claimed to miss sitting in his backyard at home.

thanks, sebastian. get all the jello and ice chips you can stand, and then get home to your comfy chair in the backyard safely and quickly.

i returned home last week to find this new year’s card from sydney. sydney is a teenager with congenital heart disease, and about a year ago she wrote to me telling me she was saving up money to buy my book. so i sent her one, instead. a year later sydney still remembers me. thanks, sydney. this is the best holiday card i could hope to get.

not everyone runs on batteries, but i do.

(thanks to jonathan for the concerned shout-out)

i have looked like this for two thousand, eight hundred and one days. after thursday, i’ll look different than i ever have before.

home from the conference in florida – a success, i think – and scrambling through a busy week. another busy week to follow after this one. there’s much to update here but i’ve been distracted by offline things, scheduling shoots and logistical matters. soon, though, i promise. in the meantime, this was the view in the aisle across from my seat flying back to orlando. in a layover in the phoenix airport i got to partake of the pleasures of a tamale burrito (a tamale inside of a burrito? mexico’s answer to the turducken) which, aside from being rather starchy, wasn’t half bad. there are certainly worse things to eat in airports.

anyway, my sincerest thanks to everyone at the children’s hospital of philadelphia who made my experience at the conference so pleasant. i gave the final plenary talk on the final night of the conference to a really big room. kinda nerve wracking, but it seemed well received. (thanks gil, tina and natasha! and thanks to the good folks at it’s my heart for letting me commandeer the table next to them to sell and sign books.)

this week i’m headed off to orlando to the cardiology 2010 conference. i’ll be speaking and signing books there saturday night (2.13.10) at the disney contemporary resort. if you’re in the neighborhood please stop by and say hello!

as part of my presentation to the conference i made this short film. this conference is mostly a medical one, with 26 of us (out of 900 attendees) being classified as “miscellaneous.” a long while ago i met a CHD researcher who told me that one thing doctors and scientists often miss out on is information on the emotional lives of their patients. given that, i wanted to show how some of the subjects from the book are doing now, as young adults out in the world. they’re dealing with the same things we all have to contend with – school, the future, family, love, fear. and they’re all a whole lot more interesting than listening to me speak!

my recommendation: watch it HERE, full screen, in HD for best results.

at some point yesterday, stuck in traffic driving home from visiting mario and ali, i realized that i’ve been photographing them off an on for ten years. that’s a whole decade. i tried to think of who else – aside from maybe my family – i had spent that many years photographing. there aren’t many people. certainly not in the same way. i met them both when they were eight years old. i’m amazed they’re not sick of me and my cameras and my stupid questions by now.

when i got to mario’s house he had the hearts book out on the coffee table in the living room. he said he likes to show it to the girls he brings home. apparently that works for him. glad to be of service, mario. i try to be helpful.

anyway, yeah. ten years. and the last real picture of 2009, and of this decade. seems fitting to me. thanks, guys. for everything.

photo by sydney taylor

back in september i got an email from sydney. sydney is 15 years old, a congenital heart patient, like me. unlike me, sydney had her first pacemaker implanted when she was only 15 hours old (i was eight (years)). she said, “I am saving money to buy your book because it is the most incredible thing I have ever seen!! . . . when I get my hands on a copy I will carry it around with me everywhere and show everyone!!!”

i told sydney i’d send her an autographed copy of the book if she promised to tell me what she thought of it, and send me a picture of the book in her house. the review arrived a couple weeks ago, the picture arrived last week. thanks, sydney. merry christmas.

in about ten weeks i’ll be an uncle. that is, i’ll be an uncle officially. my brother is having a baby. it feels like i’ve been an uncle for a very long time. even though i don’t see my many honorary nieces and nephews very often these days, there’s a strange sort of closeness that comes from photographing someone over and over again, and watching them grow up in front of you. really, with all the kids in the hearts book, i feel a sense of responsiblity, pride and protectiveness that could only be greater if they were my actual children. although, being an honorary uncle/older brother is probably much easier. having ten kids seems quite difficult – especially now that they’re all teenagers, with some even in their early 20s.

ali is going off to calarts next year to study photography. she wrote about me on her application essay. i mean, really, what more could a proud uncle ask? for weeks now since summer break started we’ve been trying to find time to hang out. since holidays don’t mean much to me (or to most freelancers) the fourth of july seemed perfect. ali was in hollywood, house-sitting for her aunt, and taking care of the dogs. she’s 17 now, and if i were in high school ali would probably be the one i’d hang out with. though to be honest she probably wouldn’t hang out with me because i don’t have a studded vest or a mohawk. she’s such a punk rocker, i totally didn’t see that coming ten years ago. i’m sure her mom didn’t, either!

ali’s last open heart surgery happened when she was young enough to let it be just a faint memory now. she’s lucky in that regard, but also unlucky in that she’s unused to all that goes along with such things. case in point, shortly after the 4th of july she had to get a blood test at a routine doctor’s appointment, and i received many panicked messages on facebook along the lines of “max, it was nice knowing you. you’ll remember me as ali sandoval the girl who died when getting her blood taken.” followed shortly, of course, by the more relaxed: “MAX!!! i lived!!!”

below, along with more pictures from the 4th, is a short 2 minute video, and a photo of ali on the first day i met her, almost a decade ago.

i’m going to be at the nextmed MMVR (medicine meets virtual reality) conference next week in long beach, california, if anyone wants to stop by and say hello. come down to the hyatt regency, i’m sure it’s lovely. i’ve been asked to put up an exhibit of prints from my book, my heart vs. the real world. at first i was expecting to have to make framed prints, but it seems they have the exhibit area (called “the well”) set up in a way where we each get a 6 by 8 foot bulletin board and prints will be tacked up with thumbtacks. since it’s a bulletin board i figured i might as well treat it as a bulletin board and scatter things around somewhat organically. above is my clumsy photoshopped mockup for that display. click on it to see it bigger.

here’s a description of the conference, from their site:

MMVR is the premier conference on emerging data-centered technologies for medical care and education. It brings together an interdisciplinary, vanguard community of computer scientists and engineers, physicians and surgeons, medical educators and students, military medicine specialists, and biomedical futurists.

MMVR presentations offer a critical review of current progress: from initial vision and prototypes, through assessment and validation, to clinical and academic utilization and commercialization. Extrapolating from the state of the art, MMVR examines and guides the future of healthcare.

This year’s MMVR will feature expanded spontaneous interactive environments. The Well will merge formal exhibits with casual demonstrations. Salon will mingle the visual arts, science, and medicine.

At MMVR, developers and end users collaborate to design the next in medicine. MMVR turns vision into proficy™.

information on other exhibitors here.